REFLECTIONS ON CHEMO

As an overall, everyone has been asking me if it was worth it. Now it’s over – yes. I remember during my third treatment the nurse who was helping me made a very comforting and encouraging remark. He told me he’d been doing this for 25 years and thought I was smart to be this aggressive. All it takes just one teeny cancer cell to find a new home and it can become a death sentence. Another lesson I learned was how physically vulnerable we truly are. Our ultimate fate is out of our hands, it’s in God’s hands.

Was it as bad as I thought it would be? No. I was lucky that I never lost my eye lashes and eye brows. The mouth sores were not any worse than the good old canker sores that I get on and off anyway, although I won’t miss swishing my mouth out with baking soda and water. Having dry eyes, dry mouth, and a dry sore throat were far worse, I would wake up night after night gagging and coughing out of control. I lived on Ricola lozenges. My taste buds did change some but not as bad as I was warned and my appetite is still off. I confess that was tough, the constant queasiness and never feeling normal hunger pains. My skin feels like parchment. It’s still creepy looking in the mirror and seeing a bald head. I have new empathy for guys who go bald, it’s amazing how cold my head gets and I wonder how they stand that. But I’ve gotten into a routine that works for me. I always wear the wig when I go out to do things then I replace it with one of my hats when I’m at home. Heat can fry the fake hair, so no cooking or opening the oven with it on. I don’t trust myself to remember. But all of these issues will now go away, my hair will grow back and my body will heal!

I think the hardest part was mental; dealing with the knowledge that I would feel sick over and over for the 2 months and having a sense of dread not knowing if it would get worse each time. I think about people I know or anybody who have long drawn out illnesses or chronic pain. I have such new empathy and respect for them. I must be so hard to find hope for the future.

Coming up next, radiation.

LAST TREATMENT

On December 15th, I went through the routine one last time. I brought my daughter with me who was home from college. I was so excited knowing this was it! The only difference was I asked my doctor if there was some way I could either enhance or change the anti-nausea drugs to see if I could get a better handle on the churning stomach. He did! He added on a powerful drug at the very beginning that would make me very sleepy and have amnesia. He asked if that would be a problem. Hmm… let’s see no memory of my last treatment…no, I don’t think so.

Well, he was right. After it was over, my daughter and I went to lunch to celebrate, or so I was told. One of my sons called and we talked for about a half an hour. I called him the next day to let him know how things went, he just laughed. All I can say was I had no nausea, little memory, and slept like the dead. I wish I had spoken up from the very beginning.

Still, it was a tough week, lots of queasiness and the good old reaction to the shot. I think it wouldn’t have been so bad if I hadn’t been trying so hard to feel well enough to attend various Christmas activities and get caught up on my very long list. Luckily I didn’t over do it, the body wouldn’t let me. I did much better the week of Christmas. I was able to do some shopping and put together our usual Christmas feast. Luckily our kids are older and understood what I had been through. They were helpful and didn’t expect the usual.

THE DARKEST DAYS

The day after Thanksgiving I woke up with a cold. It wasn’t bad but I knew in my situation, things could change fast. Luckily by Sunday evening I still felt under the weather but not too bad. The only thing I cared about was to not have my third treatment put off. So I had my husband give me a blessing and I was told I’d be okay and would be able to have my treatment the following day.

This time I decided to go on my own and I’m glad I did. I ended up being at the cancer center for over 5 hours. Because of the holiday weekend they had to push the treatments either forwards or backwards and there were a lot of patients waiting for their treatments. After the first one, I had a little routine I followed. First I check in and have blood drawn to make sure my red, white, and platelet’s counts are at healthy levels. Then I meet with my doctor where he does a quick physical. He then makes the call on whether I get to do the scheduled treatment. I confess I kept coughing and blowing my nose. Luckily he said my lungs sounded nice and clear and my blood count numbers were good. I was very relieved and able to do the treatment.

That same evening I attended a very fun event called “Look Good, Feel Better”. It is something that cosmetic companies do for women with cancer all over the country. About 15 of us sat around a table in a conference room where we learned how to care for our scalps and skin. We got great make-up tips and saw clever ways to wear scarves and hats. The best part was all of us received over $200 worth of free make-up courtesy of most major cosmetic companies. It was so wonderful to sit with these wonderful ladies knowing we all had something in common. They all had different stories and different type of cancers which helped remind me how blessed and lucky I was. My chemo was a choice, not a necessity.

Later that night I was hit once more with nausea and I have to admit that it was worse this time. Also because I was already sick, my reaction to the Neulasta shct was pretty awful. I felt rotten from head to toe. My simple cold ended up turning into a sinus infection. So on top of queasiness and feeling achy, I had a sinus headache, bad cough, and very sore throat. That was the worst thing of all because of dry mouth and what chemo does already. Sleeping at night became very difficult. I finally went to my regular doctor so I could get going on some antibiotics. I was concerned that if I didn’t get it nipped it would affect my next treatment or worse- end up in the hospital.

Luckily the drugs worked and cleared up my sinuses. I finally was able to get up and start functioning again. What a long two weeks! It didn’t help that it was now the holiday season. I missed not being able to go out and see the lights and enjoy the hustle and bustle of Christmas shopping and baking. I love to sing Christmas carols and prepare for our church’s Christmas program, but I had no voice and was still coughing up a storm. I also was dreading the fourth treatment – it was a very dark time for me mentally.

LOOSING THE HAIR

I was told by others that most women start loosing their hair just before the second treatment. I decided to go wig shopping about a week before my second treatment so I would be prepared for the inevitable. I have to admit, I was relieved to find that wigs are not bad looking and cheaper than I expected. My sister who is a beautician and others recommended that synthetic was better than real hair so that was what I went with. I would have never known the difference, they all looked so natural. I actually had a great time with my daughter trying on all kinds of lengths, colors, and textures and found something I really liked.

I decided that there was no way to prepare for the loss of one’s hair. I knew it would be traumatic but was not sure what to expect. This was where I learned my next chemo lesson. I had been advised by those who have been in these shoes to shave my head before the hair started to fly away. I just couldn’t do it, the only thing I did was get my hair cut short. Also the timing was tough because I started pulling hair out about the same day as my second treatment. So my focus was on trying to get through the first few days without wanting to puke. Luckily I did do better the second time around. I made sure I ate and I took my backup anti-nausea drug before I felt so lousy. Still my stomach was churning right and left and I had to focus on breathing in and out. Once more about midnight, I felt all of the turmoil melt away and I slept great again.

Within 3-4 days I really start to see hair falling out. I wish now I would have heeded the advice to shave my head sooner. I didn’t and it was terrible pulling clumps of hair out, I felt like a radiation victim. Also instead of getting use to this change gradually, it was awful to look in the mirror and see my hair getting thinner and thinner seeing bald spots appear. I kept finding hair everywhere on my pillow and on my clothes. Finally I shaved my own head then had it done professionally on day seven. It ended up being a very positive experience. I went to lunch with some wonderful friends then we all went to my beautician/friend’s house where my head was shaved. Everyone complimented me on my “nicely shaped” head. My wig was much more comfortable with the hair gone.

The other negative thing with loosing the hair was how tender my scalp was. When I brushed against my stubble that was left, it was very painful. That was something I had not read about. My biggest problem was trying to sleep. Anything I put on my head would shift the stubble causing great pain, even moving my bare head on the pillow case hurt – long night. Finally I discovered that a fake fur pillow I owned didn’t shift the stubble so I could sleep. What a relief! That helped me deal with everything else going on.

That was my first really hard time. I guess it was the combination of loosing the hair and only being half way through the treatments. Everyone kept saying how exciting it was that I only had two more treatments to go, but to me it felt over whelming. My break this time was 2 ½ weeks because my third treatment would have fallen on Thanksgiving Day so they moved it to December 1st. I remembered thinking before how nice it would be to get such a long break allowing my body to heal and get back to normal. But the reality was the opposite, I felt I was waiting for the ax to fall; I just wanted it over asap! It ended up being a very long holiday weekend for me.

THE WORLD OF CHEMO

Before I could start the chemo I had to have a heart test called a muga-scan. This was done at the hospital to make sure I had a strong and healthy heart because one of the drugs I’d be taking is hard on it.
Then I drove down the road to the cancer center for my cancer talk. For the first time I got to go into the back where everybody receives their chemo treatments. It’s a big open room with large windows facing the fake lake in the back of the building. There were lots of recliners with small tables and chairs for care-givers. I saw a variety of men and women hooked up to IV’s looking amazingly calm and quite at home. The other thing that stood out was how many were munching away on their lunches. Thank goodness none look like they were at death’s door! A nurse then took me into a back room where she described how my sessions would go and what to expect. She then discussed potential side affects and how to counter them. I had already read tons of material on the subject so I felt prepared as I asked questions. The main thing that stood out in this little interview was her comment on duration. She said that since I was doing only four treatments, I should have fewer side affects. She said that I was very lucky! I was most heartened by this comment. I guess it makes sense that the more treatments, the more the body is worn down. Still chemo is chemo and everyone reacts differently, I just hoped that it would go smoothly. I would have four treatments every other week. So that put my last treatment in the middle of December, what a great Christmas present!

I had my first treatment on October 30th at noon. When I got up in the morning I ate a good breakfast (they said that was important) and I took my anti-nausea drug called Amend. It better be good seems how it costs $75 for three pills! Then I had my husband give me a priesthood blessing which was very comforting. It said things would go smoothly and my body would be able to handle the drugs. After we arrived I signed in and made myself comfortable in one of the chairs. I brought a huge water bottle and a book to read. I confess I never opened the book; I was much more interested in watching everything and everybody in the room. I wondered what their stories were and I hoped they were all responding well to their own treatments!

When I had met with my doctor the week before, he told me that I would not have to have a port put in. That’s because I was only doing four treatments and could alternate arms for the IV. Those who have lots of lymph nodes removed have to deal with a condition called lymphedema which can cause many problems with that arm. So many blessings! So they put the IV in my left hand. They never start farther up the arm just incase there are problems and have to find a new site. The first thing they do is run saline through the vein to make sure it can handle the job. I could feel the cold saline go through the vein up into my arm. Now that is a weird sensation but it’s what the nurses want to hear because that tells them they tapped into a good one. The first bag of goodies was anti-nausea drugs and a steroid to help minimize the side affects, this took about eight minutes to go through me. Next came the first and scariest chemo drug. It is called Adriamycin. It has to be given by syringe directly into the central line by the nurse. The drug is red in color and very toxic. It can cause tissue damage if it escapes the vein, so they give it by hand very slowly diluting it with saline while I pay close attention to any changes on how I feel. This way they have complete control over the situation. There were two syringes and it took around fifteen minutes. Then they ran a syringe of saline through the line to make sure there is nothing toxic left in my vein. I confess it was very creepy watching this go into my body knowing what it could do, but I didn’t feel a thing at all which was a relief.

The next drug is called Cytoxan. It’s given with saline in a bag which took around 40 minutes to complete. Once more I didn’t feel any different which was normal. During this time I was told to drink like crazy so I could flush these drugs out of my system as fast as possible. Once they are in the body, they do their job immediately. Here is a quick explanation of what they do. Their job is to kill fast growing cells. Unfortunately it can’t differentiate between cancer cells and other fast growing ones. Hence, the side affects. That is why patients loose their hair, have mouth sores, and digestive problems. It also affects the bone marrow so red and white blood cells and platelets are destroyed making one tired and susceptible to infections. The reason there is nausea has to do with the brain trying to get rid of a toxic substance.

The last bit of advice I got was to eat and drink at least 16 glasses of water in the first 24 hours to get rid of all of the chemicals out of the body. I was also told to go to the bathroom often so nothing toxic would be sitting in the bladder. That made sense to me and I followed that advice to the letter.

After we left, we grabbed a bite to eat then went home. This was where I blew it. I confess I was so full of water and had started to feel lousy so I didn’t eat the rest of the day. In the evening I got extremely nauseous. I wanted to die! I tried to throw up but nothing would come up. I called the doctor and they recommended the other anti- nausea pill (a back-up) called Compazine and to get something in my stomach. I cannot even begin to express how awful it was to force oneself the eat feeling that rotten. Unfortunately, nothing helped. My poor husband and son sat on the other couch looking completely helpless and unhappy. Around midnight I finally asked my husband for another blessing begging for some relief. I immediately dosed off and when I woke up within that same hour the nausea was completely gone and I slept the whole night through.

When I woke up the next morning I still felt okay, just queasy because I was so hungry. This was where I learned my first important lesson with chemo. It’s a lot like morning sickness when one is pregnant. I learned I needed to keep something in the stomach all the time for the first five days after a treatment session. I started to carry food in my purse and in the car as a backup.

The next day it was back to the cancer center to get another injection. This is something new called Neulasta. It is a white blood cell booster that accelerates the making of white blood cells. I was told the side affect was feeling achy like a flu bug. I said as long as nausea was not involved, I would survive. They were right; I did have flu like symptoms and felt like I had been run over by a truck! I even went to bed at 7:00 that night and slept until 8:00 the next morning.

As an over all, I must say that once the nausea was gone, the first treatment was not as bad as I anticipated. I had some indigestion and was tired in the evening, but that was all. I felt completely like myself by the time the next treatment came around.

THE GREY AREA

I recovered very quickly. Of course I was sore but I healed with no complications. When I returned for my post surgery check-up, I found out that my actual cancer was only 1.1 cm and the borders were clean. I was very excited and assumed that meant we could go straight to radiation and that I had dodged the chemo bullet. My doctor unfortunately burst my bubble by informing me I was in the “grey area”. This foul sounding term is for those whose cancer is between 1-2 cm, hormone positive, and her-2 negative. I was told the unhappy fact that microscopic cancer cells can escape the lymph nodes and find a new home somewhere in the body. She said it was the oncologist who would know best whether to recommend it or not based on statistics. The sad fact is there is no blood test that exists that can verify whether there are cells wondering or not.

I met a couple of weeks later with my oncologist. I was very nervous as I thought about unruly cancer cells trying to set up shop somewhere inside of me. It gave me the creeps! On the other hand chemo sounded so dreadful too. What a spot to be in, no black or white solution. He sat down and showed me this nifty graph. It takes my tumor facts and spits out my chances of being clean and alive in 10 years. I found out my cancer was a grade 3 (aggressive) which increases the odds of re-occurrence. The bottom line was if I added on hormone therapy (taking a pill called Tomaxifin for 5 years), it increased my chances of survival to 77%. If I then add chemotherapy, it bumps me up to 84%. So the magical number was 7%. Is chemo worth it? Well, both the doctor and I agreed that it was. But, he cried, they have a brand new test called the Oncotype Test created just for people like me.

What this test does is it looks at the specific genetic markings of the tumor and runs my markers against thousands of others and matches mine with those people with similar markings. Then they will rank my tumor into 3 categories of low risk (1-18), intermediate risk (18-32), or high risk (32-50) of re-occurrence. For me this was a hard decision because it is new and once more based on statistics. It is a very unnerving notion that one is putting one’s future life on the line based on statistics. There was also the problem of insurance. Not all insurance companies are onboard with the price tag of $3,500 - $4,000! I was told that our company had been coming through with paying for this test for the past few months. Well, my husband and I decided the more info the better to help me decide whether to do the chemo or not.

So, I had another two week wait in front of me and I admit I was very nervous again. I suppose I hoped that the number was either very high or very low so the decision would be easier. I decided the best thing I could do was pray and pray some more that when I got the results back, I would know what to do. Well, when I got the numbers I was not too thrilled. I was a “20” which was the low end of “intermediate risk”. Basically what that meant was with the hormone therapy it boosts my chances of being alive and healthy in 10 years to 87% and with chemo added it went up to 90%. So the new magical number became 3%. My doctor recommended that I not do the chemo. He felt that the chemicals as we all know are hard on the body and that it was not worth the side affects. But on the other hand, I was still in the intermediate risk category, so if I chose to go forward with it, he would support me and get the ball rolling.

Well, all the way home I was grinning from ear to ear. I decided right then and there that I was not going to do the chemo. I figured I would start to eat more healthily, exercise more faithfully, and let the Tomaxifin kill all of those renegade cells. No puking, no hair loss, no mouth sores, and not being tired all the time. Suddenly the holiday season coming up was looking much brighter. So I told my husband, kids and a couple of friends what I had decided. On the other hand this was a very important decision and I had fasted and prayed that day. I asked my husband for a blessing for guidance and confirmation and in the blessing he said that I would know what the right thing for me would be. So I went for a long walk in the quiet dark around my neighborhood thinking through all of the facts weighing all of the pros and cons. I sill came back to the same answer – no chemo, why put my body through that sort of trauma for a measly 3%.

Still I had to remind myself that this test was new and based on statistics. So the last thing I did before I went to sleep that night was to say my prayers asking if I had chosen wisely for me. Well, I woke up in the middle of the night with a huge “stupor of thought”. I felt very strongly that I had made the wrong decision. When I got up the next morning I spent the whole day seriously restudying everything the doctor had told me or given to me to read. I reread parts from my library books. I had a doctor friend download all kinds of info that pertained to my unique “grey” area. It was a long day. Everything concurred with the advice from my doctor and with my decision, yet it did not feel right at all. That evening while I was at work putting books away in the library I finally quit thinking so much. I had confided to one of my friends at work showing her all of the graphs and stats, all she did was look at me and say, “Just remember, what ever decision you make, you have to live with it. You can’t change your mind later.” I finally had to admit to myself that for some reason I was supposed to do the chemo and when I did, I felt all of the turmoil go away and a complete peace filled me. Suddenly it was okay to go through this scary process, hair loss and all.

SURGERY

I have a confession to make; I have never been under the knife. I haven’t even had anesthesia before except for those fun colonoscopies. I was very, very nervous. One of my favorite channels on TV is the Discovery Health channel. I love to watch all of the various medical mysteries and hospital dramas that occur. Suddenly I refused to even look at any medical program that dealt with anything more traumatic than a hangnail. All those horror stories were no longer exciting, funny how switching seats can make things a little too real. In the meantime I had meetings with both oncologists. I found out that my cancer was both estrogen and progesterone positive which was good. Also it was Her-2 negative which was also good. I work part time at the local library so I was able to clean the bookshelf of every book written on breast cancer. I was amazed how many there were. I began to read like crazy to help me understand all of these new terms. That was very helpful! Now that my literal life could be at stake, everything I read was riveting and far from boring.

The doctors recommended that I have an MRI before the scheduled surgery to make sure there were no other lesions because of the useless mammogram. I have never had an MRI but had heard that if one is claustrophobic, it can be a bit traumatic. Luckily I’m not and it went just fine other than how noisy it was because my earplugs fell out. It sounded like loud bangs and a jackhammer - which beats having one’s boob squished any day! I got the results after another fun wait and it showed no other problems. So my advice to all of the ladies in this audience is to be very vocal if you have dense breasts. It never crossed my mind to ask for additional testing, especially in light that breast cancer is in my family.

I was operated on September 12. I was very blessed that so many family members and good friends had fasted and prayed in my behalf. I also had a priesthood blessing the night before which took all of my jitters away. I can genuinely bare testimony of the difference it made during this entire ordeal. It was great to walk in and feel completely calm and interested in all that they did in a detached sort of way. I chose to have a lumpectomy with a sentinel node biopsy. This is where the surgeon injects either a blue dye or a radioactive tracer into the area where the tumor is located. The dye or tracer will mark the first nymph node or nodes most likely to have cancer cells if they have left the breast. This procedure is relatively new and will give the patient the advantage of being sure there’s no cancer in the nodes without the complications of a full dissection. The node is then whisked away to the lab where they look for the presence of any cancer cells. In the mean time the surgeon will do the lumpectomy while waiting for the results. If the node is clean my ordeal is done and I’m sewn up. If there are cancer cells present then the surgeon will perform the routine auxiliary node dissection. This is where the first layer of lymph nodes under the arm pit is removed and sent to the lab.

The doctor told me that I would know when I woke up if my lymph nodes were clean or not. They have to stick a drain in the wound if the latter is performed. So when I came to a couple of hours later, it was the first thing I paid attention to. All I can say was I was relieved beyond words that there was no tube sticking out of my armpit! No cancer cells in the sentinel node! I was also relieved to have no nausea from the anesthesia, that problem as wreaked havoc among other family members.