From Me to You: Beginning your Chemo

Very soon after you find out you have cancer, you will be faced with chemotherapy. As bad as “chemo” is, the good news is that it seems to work better now than ever before at eliminating or reducing cancer in your body due to improvements in the amount of poison you can be given without your body shutting down.

The amount of “chemo” you should have is a guessing game of sorts because everyone’s body is different. The doctor figures out how much should kill you and then backs off of that strength a bit. While an exaggeration, there is most likely some truth to it. For me it is easier to comprehend what is happening to you in such simplistic terms.

In retrospect, the biggest problem I had with chemotherapy and radiation was not knowing what to expect. Because I did not know what to expect, I did things wrong and I was not as prepared as I could have been. While the process will never be easy for anyone, there are some things you can do that may make it easier or at least not make it worse.

You might wonder how it is possible for there to be things that you can do better than even the doctors who are trained to deal with “chemo”. Doctors and their oncology staff do care and try to help all they can. However, they are more reactive to your problems than proactive. This is because they have not had chemotherapy or radiation themselves. Also, each person is different and reacts differently. Only you know your own body. They see certain types of things happen to people, but they don’t know if those things will happen to you. They don’t always remember to tell you what can happen, or perhaps since they have not experienced them, they do not describe them in a way that causes you to be concerned and to react or plan properly.

My doctor and nurse were primarily concerned with the type of chemotherapy I would be receiving, delivering it and monitoring my health in the process. They were not as concerned with helping me AVOID certain types of problems or MANAGING them better. I am not suggesting that they did not care. They cared very much. But they were very busy handling lots of other patients. Their job was to get you set up, deliver the chemo, and send you on your way. They simply did not have time for much hand holding or discussions about what was to come. Much of my early helpful advice came from other patients who did understand and gave practical guidance on how to live through the process.

My cancer was a soft tissue sarcoma (liposarcoma) near my right arm pit. The tumor presented itself as a lump in my armpit. It was surgically removed with a wide margin.

Chemotherapy was set for six cycles lasting one week each (with about two weeks break in between cycles).Each cycle was one full week, 24 hours per day. I was dropped off and picked up at the oncologist’s office each day where I was given chemo and anti-nausea drugs by IV and after half a day sent home with a bag of chemo and a pump. I also was given thirty-some radiation treatments while I was on chemo. These began about a month into my chemo regime.

So, here is what I have learned. These are things that would have helped me personally with MY REGIME which might be different from yours, both in duration or types of chemicals used. Still, I truly believe that many of these things would help anyone and so I am listing them here for your review. Good luck.

PLANNING. Don’t bother figuring out exactly when you will be done with chemo or which weeks you will have chemo. There is a tendency to mark up your calendar and plan around the cycles. The problem is that your blood counts will cause the doctor to hold off an extra week or two between your cycles to allow your blood to build up before administering your next cycle. Other than the first cycle, your calendar will change each time. Plan on not being able to plan. You should plan on the process taking one to two months longer than you think it will take. Don’t rush back to work if you can give yourself more time. Don’t plan on being able to work while you go through this. Some people can do limited work, but most cannot. It affects your brain and your ability to concentrate and read. I do not know anyone who was able to read books during chemo.

WATER. You will be advised to drink lots of fluids. You will be told that you must drink lots of water and this admonition will be repeated often. The problem with everyone saying this to you is that they have no idea how bad water will taste to you. I have only one word for it and that is VOMITOUS.

How can a person drink all the water required when it tastes so bad? I certainly could not. I could not drink most fluids as they all seemed to taste so bad to me. I found myself just ignoring everyone and telling myself what they were asking was impossible. They were asking something of me which (in my mind) could not be done. This was bad because I began not to trust them and their instructions with regard to how I felt. As a result I was hospitalized for dehydration when I collapsed in my doctor’s office towards the end of one of my later cycles. I nearly died. I totally trusted their decisions as to which chemicals and how often I would have them. I had not trusted them on this issue and it almost cost me my life.

After this episode and in the hospital bed, I mentioned to my sister in law that I felt the only way I could get enough fluid in me was through IV. She gave it some thought and came up with something for me to try. It was Kool Aid. The large pre-sweetened packages to which you just add water. She bought me several packages and when I got home I found I COULD DRINK IT with no gag reflex. Not only that, I could drink lots of it. I kept a pitcher near me and could monitor my fluids that way. It really worked. I believe that at least for me, it had a strong enough flavor to overcome the chemical flavor in my mouth that so readily made every other fluid intolerable. I cannot tell you why it does this. I can only tell you that it worked for me and often recommend it very early in chemotherapy to keep yourself hydrated. You need the water to flush the poison. If you don’t get enough water, you do not flush enough poison and your body becomes too toxic and dehydrated. At least that is how I see it now in retrospect. All I knew at the time was that I could not drink water, no matter how often I was asked to do so.

COMPAZINE. When you begin chemotherapy for the first time, you are prepared for the worst. You expect to get sick as soon as the IV begins putting that bag of chemical into you. The problem is that they put anti-nausea medication in the bag and aside from getting a little cold during the process, YOU DON’T FEEL SICK. In fact, you go home feeling pretty good and thinking that maybe this won’t be so bad after all. If you are like most, you take your medication half-heartedly because you don’t feel bad. Some people don’t even take the Compazine (anti-nausea medication) because you “don’t feel sick” and you will “take it when you do feel sick”. This is a horrendous mistake. When you do begin to feel sick, it is too late. You then take your pills and promptly throw them up. Because you can’t keep the anti-nausea medication down at this point, it gets so much worse that you feel you want to die.

It may not be possible to avoid part of the above. After all, we are all different and some people can tolerate more than others. However, I would be very surprised if this was not the most common scenario for most people. There is, however, a superlative backup. What you need are Compazine suppositories. Suppositories stay in when everything else you have taken by mouth comes up. I don’t understand why most oncologists don’t give their patients this right away. It really helps you control your nausea. I rarely used the pills after I saw how well the suppositories worked. At the very least you should have them available if you have a spell where you can’t keep anything down. Trust me, this will happen.

MEDICATIONS. Regardless of what you might think when you begin, YOU MUST CONTROL YOUR OWN MEDICATIONS to minimize the effects on you. You are sick and so you feel you want others to do this for you. It is not possible. They have no idea what is working or not working without your input and help. As sick as you are, not doing this will guarantee you will get significantly more ill through the process.

The same medications work differently from one person to another. You must experiment and find what works for you. If a medication does not work for you, get something else and talk with your doctor. Your doctor will not know if something is working well or not unless you talk with him or her. To have that talk, you need to be paying attention to what you are taking, when, how much, and together with what. When you find a combination that is working for you, stay with it.

The quicker you figure out what works and how and when and for how long, the better off you will be. The earlier the better. After each cycle, your body gets weaker and gets hit harder by the treatment, so getting the medicines working well for you early, keeping hydrated, and minimizing nausea are important to do right away.

FOOD. Chemotherapy affects the flavors of everything, so you must experiment with foods also. I told my wife to buy several things and throw away anything I did not like. Sometimes there would be something I loved one day and the next day it made me sick to look at. You cannot worry about waste during this time. It is all about whatever tastes good that day and whatever you might crave that day. Sometimes I would crave something, get it and hate it. It just happens.

There were some standbys that kept me alive. There was never a time that I could not eat WATERMELON. I don’t know why, but its flavor always worked and it was juicy and moist and soft. There were days where this was all I could eat. Other melons did not work this way. Chocolates always seem to taste good as a treat. I discovered that popsicles were very good near the end of my experience. They had strong flavors and were moist. Somehow, their flavors were not corrupted and they felt good on my mouth.

TENDER MOUTH. Somewhere after your second cycle you notice your mouth is tender and can tear easily on food that would not normally tear it. Fortunately for me, my dentist learned I would be having chemotherapy and gave me a special type of rinse to keep my mouth from getting infected. Later I learned that mouth infections were common. Because he got me going with it early and perhaps with just some luck, I did not get mouth sores. I was very grateful not to have this problem with all else that I had going on. I would recommend using a rinse daily as I did. Your dentist will recommend what is best or your oncologist can.

CONSTIPATION. This is common, but is caused by pain medication. For some reason, pain medication causes constipation. Since a person often goes from surgery to chemotherapy, if you are not aware and do not cut back as soon as you can on pain medication, you have this problem. You can get medication for constipation, but it is caused by the pain medication. Therefore, if you can get off the pain medication quickly, this problem will be minimized. My own experience was that the pain medication with the chemotherapy for me was a very bad combination and exaggerated the effect of chemotherapy on me. For me the bonus of stopping pain medication was two fold, constipation ended and the chemo effect was not as bad.

DELIRIUM. I had this during the end of the first cycle very badly. I believe this was due to the combination of vicodin (pain medication) and chemotherapy I was having. I am not sure. All I know is that after I stopped the pain medication, this no longer happened. If you experience delirium and are on pain medication, you may wish to get off pain medication sooner if possible.

VEGETATION. You will be amazed that you can spend so much time just sitting and doing nothing without it bothering you. It was amazing to me how content I was to simply sit and day dream the hours away. I could not read as I could not concentrate. Many people who have had chemo that I have talked with, including my wife say the same thing. Don’t expect to be able to read during this time. Actually, anything that requires concentration will most likely not work. Certain TV programs work, but most often I did not wish to watch TV. My wife had certain programs, like Law and Order, that move in quick segments that she really liked.

You need a chair that can get you close to horizontal. For me the chemotherapy process exhausted me physically, even though I was doing nothing. I found that I did not have the strength at times to sit up. Only lying down would relax me. I suggest a good easy chair that reclines to nearly horizontal when you are “up” and the rest of the times in bed with bathrooms close by either place.

ASSESSING YOUR ENERGY. You will find that you cannot assess how much energy you have. You do not get gradually tired. All at once you will realize you have nothing left and if you don’t lie down, you will fall down to get your body horizontal. You simply run out of energy to hold your body up. There is nothing in life that prepared me for this. It was very frightening to me to be so vulnerable to near instantaneous collapse without any warning. If you must go out or do something, you must have someone with you. You should not walk far at all as you may not be able to walk back or be carried back. It should be clear that you should not be driving at all. Your judgement and reflexes are impaired by the chemo, not to mention that you could be subject to an attack of weakness described above. You could seriously hurt someone else, if not yourself.

DEPRESSION. It is hard to avoid this, but the good news is that most of the time you are too tired to be depressed. What really helps is to get outside when you are feeling better. You get time in between your treatments to give your body a chance to recover before the next cycle. For me I was able to get out with friends on a golf course and ride in the cart. I could then stop whenever I was tired and still be outside enjoying the scenery and the outdoors. This was HEAVEN after being inside so long. I looked forward to this time more than anything. It does not have to be golf. It could be a riding along the coast in a car or sitting in a park or in your backyard. You need to get outside and you need to be safe if your energy runs out. Getting outdoors reminds you why you are going through the struggle. It reminds you how great it is to be alive.

RADIATION. Most people will tell you that radiation is not as bad as chemo and certainly anyone who has had both would rather have radiation than chemo. Sometimes you get radiation along with chemo. That is what happened to me. I had thirty-some radiation treatments while I was on chemotherapy. The problem for me was how raw my skin became where they were radiating during the last treatments. At one point it was so bad my skin looked like one big “strawberry”, like what we used to get when we would slide into home plate as kids. It was really raw.

I remember being very upset with my radiation doctor because he told me this could happen, but made me somehow believe that it might not happen if I took care and did the things he suggested. He was indignant when I was upset that the skin was so bad. We argued about what he did and did not say to me. I know what he did and did not say, but he really thought he had told me more than he did. This happens. Finally, he recommended some cream. It was white and came in a jar and was burn cream used on third degree burns. I think it had silver nitrate or something like that in it. It was exceptionally expensive and worth every penny. It allowed me to move my arm (radiation was in my arm pit and part of my back), it took away the pain, and the most amazing miracle of all, it kept the skin from scabbing. My skin healed without scabs or sores and was a smooth as a baby’s bottom. It is a miracle cream that I would like to have had much sooner.

I used real aloe gel from aloe plant leaves after each radiation treatment–immediately when I got home and also one more time at night. I thought this would prevent my skin from being raw. It did postpone it, but it did not prevent it. I would still recommend aloe, but I would insist on this jar of cream as soon as the area starts to become raw.

PORT. Your chemo will be administered through an IV generally, but can also be administered through a “port”. A port is like a small box hooked to your artery and installed under your skin. The nurse pushes the needle through your skin into the box where it hooks in and accesses your artery like an IV. Because it is under the skin, it is protected against infection. I was lucky to have a port installed while I had surgery so that they used the port for chemotherapy when they began it. This saved me having new IVs each time which I really felt was a benefit. The port was installed under my skin on my chest above my heart. I had almost no problems with my port and would very much recommend it if you have a choice. The only thing that was hard for me was that after I finished chemo, the port was not removed for one year. It is a surgery to have it removed and my port was removed with no problems.

AFTER CHEMO. You will be very happy to be done with chemo and that euphoria will make you feel better than you really are. I believe it takes at least a year feel physically healthy and to be able to take walks and exercise a little without problems. Chemo can cause you to have a heart attack in the first three months after you are finished. Your blood thickens and can cause blockage with just minimal exercise. It is not a good idea to exercise or have vigorous physical activity. Give you body a chance to slowly get itself back together. Your heart is very weak from processing all these chemicals as is your body. Knowing what I know now (I did have a heart episode that could easily have killed me three months after I finished chemo), I would give myself a full year after chemo of being very cautious about exerting myself.

ABOUT YOUR SPOUSE OR CARE-GIVER. My wife had cancer first and is also a survivor. She experienced chemotherapy. At the time, she kind of shut me out thinking that I could not understand what she was going through. While I certainly did not, her illness affected every part of my life including a terrible feeling of concern for her coupled with an inability to alleviate my little girl’s suffering.

It was not until I was diagnosed with sarcoma (only two years later) that the barrier to communication came down. I would like to suggest that you not be upset with your care giver because they do not have cancer and you do. Also, share your emotions and feelings with your family members or friends going through this with you. While they are not sick like you, they are doing all they can and are as stressed in different ways as you are. They may even feel guilty that you have this and they do not. You must help them get past these feelings.

Choose to include them and care for them as they care for you. It will make the experience better for you both. I heard one care giver talk about his spouse’s cancer and what they went through at length. He always referred to it as “our cancer” as if he had it too. Emotionally, I know he did. Having been someone who was a care giver without cancer and also someone who went through cancer, these are observations I feel both qualified and compelled to share. Reshape your thinking.

SOME FINAL THOUGHTS. Hopefully, there will be a few things here that may be of help to you. There is no sense in worrying too much about what you will go through. You take it a day at a time and go through it as best you can.

When my diagnosis of cancer was confirmed and I left the doctor’s office, I felt hollow and numb all over. As I was driving home, I began to cry for myself. I knew I would have surgery and chemotherapy and I did not believe that chemotherapy worked because most people I knew of that had cancer and chemotherapy did not live very long.

After about two days, I realized that feeling sorry for myself would accomplish nothing. Still I know those two days of self-pity were important for me. You need to recognize your mortality in a way that you have not done before. You have to appreciate the life you have been given. You have to prepare for the worst and hope for the best. This includes getting your affairs in order, if only mentally and emotionally. I was amazed at how calmly and quickly I realized and accepted my situation.

I am a Rotarian and my Rotary Club learned of my illness through my friends in the Club. It is a large club. After my surgery and before my chemotherapy, I went to a meeting and everyone was so kind and concerned for me, it was very touching. What inspired me the most, however, were about 12 Rotarians who made it a point to approach me and tell that they were cancer survivors and for how many years. Most were survivors for over 10 years.

Nothing anyone could have told me could have had the same positive impact these messages had for me. These Rotarians, my friends, were cancer survivors and their message was that there was hope and I could survive also. Chemotherapy gets much better results than what I remember from years ago. It continues to improve each year. There is very real hope that you too will survive your cancer. It is very possible. There is hope. Embrace it.

Timothy O. Gilmore