Chemotherapy - What Happens

On March 28, 2005 I started Chemotherapy. Chemo was administered through a port I had placed on the right side of my chest. I found this was a bad location, my bra strap constantly rubbed against it and I could always "feel" it under my skin. I also felt some discomfort from the port but that may just have been psychological. Having the port helped inform my decision on reconstruction. I decided not to get an implant because of that feeling of something under my skin. I didn't want another foreign body inside me.

The actual taking of a Chemo infusion is nothing. The worst part is accessing the port (or installing the IV if you don't get a port). For those who have never had a port, each time it is accessed it then needs to be cleared with Saline and Heparin. It will also need to be cleared about once a month when it isn't being used. One of the side effects of using a port for some people is a strange medicinal or metallic taste in the back of your throat. For me this taste was so offensive I began to associate the smell of the infusion room with the clearing of the port and would vomit as soon as I walked in the room. This is bad. This is a known "condition" called Anticipatory Nausea and Vomiting (ANV) and it occurs in about 30% of Cancer patients undergoing Chemotherapy. Not all ANV is due to port access actually most is due to a learned response to nausea from the Chemo. They prescribed Ativan for me to calm me before Chemo treatments. Fortunately it stopped the vomiting, unfortunately I could no longer drive myself to Chemo.

Everyone still hears those horror stories about taking Chemo where you are nauseas and vomiting all the time. Thank goodness those sorts of experiences are for the most part a thing of the past. There are several newer anti-nausea drugs that really help. Emend and Kytril where the two that I took, other then the ANV which really had nothing to do with the Chemo, I was not nauseas at all. I did have little to no appetite but that is to be expected.

Not all Chemotherapy regimes for Breast Cancer cause hair loss. Adriamycin, Taxol and Taxotere all cause hair loss. CMF (Cytoxin, Methotrexate and Fluorouracil) causes your hair to thin, but for most women their hair does not completely fall out. If you are on a Chemo drug that causes hair loss, it is generally 17 days from your first treatement until your hair is mostly gone. There is a program called "Look Good Feel Better" available through most Cancer Centers that shows patients how to put on makeup to diminish the effects of Chemo and hair loss. I thought this was a great program and I met women there I still consider friends.

When your hair begins to fall out it just gets loose and you can gently pull on it and it will come out in clumps. Children find this infinitely amusing. My daughter's classmates all wanted to repeatedly take clumps of my hair out. I didn't mind this, I actually felt it gave the kids an understanding of what I was going through and when my hair was gone they wouldn't be scared. I never thought having no hair would bother me, what I didn't anticipate was that the losing of my hair would be so upsetting. I have given a lot of thought as to why it was so unsettling. I believe the part that bothered me the most was that the loss of hair left hair all over the house, which was a constant reminder of what I was going through.

There are hundreds of websites that will enumerate all the common side effects from Chemotherapy. Here are links for a couple of sites that talk about side effects cancerhelp.org and breasthealth.com. Keep in mind that there are other drugs you will be taking that are not Chemotherapy drugs but do things like boost your blood cell counts, curb nausea or prevent allergic reactions. All of these drugs can and do have side effects. Some of the drugs you may be given during treatment are:

Neulasta or Neupogen (10 Neupogen are about equal to 1 Neulasta) an injection given in the day or days following the infusion. These drugs help to boost your white blood cell count.

Procrit an injection given at any time during treatment when your red blood cells need a boost.

Emend an anti-nausea drug taken before the infusion.

Kytril an anti-nausea drug taken in the days after the infusion.

This list only contains the drugs that I took. I assume there are other drugs you may be given. You can search here for other drugs you may be prescribed.

Another important point is that no two people will have exactly the same reaction to the Chemotherapy drugs. You may get all the side effect listed or none of them. My experience was probably very unique. I got almost none of the common side effects (aside from hair loss and loss of appetite), no mouth sores, no diarrhea or constipation. Instead I got some very rare side effects. Neulasta can cause bone pain, usually mild to moderate that can be treated with Tylenol. I had Severe bone pain. It was so bad that you could not even touch me. Chemo can cause Neuropathy (numbness), usually in the hands or feet. My Neurapathy would change it's location after each treatment once in the hands, next time the feet, finally it settled in my face. My face was numb from the upper lip down and I also had Neuropathy in the back of my neck.

I had Chemo every other week, I returned to the Oncologist the next day for a Neulasta injection and then once again a week after the infusion for blood work. My Chemo day was Thursday (which was not how I planned it) I felt fine Thursday and 1/2 of Friday. By Friday evening I was sick and in pain. I remained that way until mid day Monday. In my house we referred to these as "No Hug Days" since the neulasta made touching me painful. I would go back to work on Tuesday (for about 4-6 hours a day) and worked Wednesday through the following Wedneday. So I got in about 6 part days of work every 2 weeks. I know women who had the same chemo as me without the bone pain who lost only 2-3 days of work every 2 weeks. I remember my Oncologist telling me I probably wouldn't be able to work and if I did not have a "Desk Job" I probably wouldn't have.

Chemo makes you lose your appetite and eating is a chore. You can catch things very easily and you need to be on guard all the time. Living with a 6 year old germ factory made things more difficult. This is important: An infection during Chemo can kill you. Please take this seriously and watch yourself carefully, taking your temperature often, because you may not realize you are ill with how lousy you are feeling. You will be very tired and you may find that your eyesight is effected. I was unable to read because my eyes would not focus on the print. I lost my period during Chemo and got to go through Menopause on top of Chemo. Of course it came back when Chemo was done and I got to go through Menopause again when I started Tamoxifen. After about a year on Tamoxifen my period returned so I will get to go through Menopause a third time.

One of the biggest things that happens to many Chemo patients is "Chemo Brain" or "Chemo Head". Your memory and cognitive skill may become impaired. My experience was that I had zero ability to move anything from short term to long term memory. I couldn't concentrate on anything for very long. This deficit took a very long time to reverse. It was almost 16 months after Chemo before I felt as though I could remember things and now 2 1/2 years after Chemo I still have some deficit and I find that I still get sick more often and more easily than the norm.

With everything I have gone through, if you asked me, with hindsight, would I do it again? My answer would be a resounding YES! In the end Chemo will be a blip in my life. I have lost a lot, I and my whole family has made sacrifices. But the peace of mind I have gained is worth it. I go to bed each night knowing I was as aggressive with treatment as I could be, and that I did everything in my power to be there for my daughter in the future. I am a better, kinder more thoughtful person than I was before treatment and I can look back on this whole experience with a good deal of humor.