Coping Strategies

My daughter attends Solomon Schechter Day School here in Connecticut. The community of parents, teachers and Rabbis at the school really rallied around us. I liken it to circling the wagons with my family in the center. They arranged for meals to be sent home with Sarah 3 days a week. People who had never met me cooked meals. They didn't cook enough for 3 people they cooked enough for 20 people. The meals were well balanced with protein, vegetables and starch.

The one thing you hear over and over again during Chemo is complaints about your weight loss from your doctors. You will most likely have no appetite and eating will be a chore. For me cooking was very difficult. If I had the energy I couldn't stand the smell of the food. Honestly I had 3 days each cycle I could barely get out of bed. I was losing 7 to 10 lbs a week. I finally came up with an eating strategy.

• Drink Boost twice a day outside of meal times. It tastes yucky but is loaded with things you need and the chocolate wasn't horrible.
• Cut your entire meal up before eating anything. My husband would do this for me.
• Eat as much protein on your plate as fast as you can. Don't talk don't stop don't drink. Remember eating fast gets more food into you before you are full.
• Only eat foods that are high in things you need. So junk food is out.

It doesn't sound like a big deal, but once I started eating this way I stopped losing weight and boosted my immune response.

Parents of kids in Sarah's class drove her home when I couldn't get there. They had her sleep over on school nights if I had early doctor's appointments. In general they treated her like she was their own child. You certainly don't expect this and I would bet you can't depend on the support, but it made everything easier for us. In earlier posts I talk about accepting help from people. This is a great example of this point. My daughter's school is a 40 minute drive from my house. As much as I still wanted to pick her up everyday, I just couldn't. I needed people to pick her up from school till my husband could get her.

This was the hardest coping strategy for me. I threw all thoughts of Self Sufficiency away. I needed help and asked for it. I made keeping things sort of normal for Sarah my priority, my ego be damned. I never forgot to say thank you when people helped me and did so publicly in the school bulletin when Chemo was over.

I found at the beginning of treatment, I was having the same conversation 10 times a day. It was also the same conversation every day. This was taxing for many reasons.

• All that time on the phone was exhausting.
• I felt like people had nothing to say to me that didn't pertain to Cancer and Treatment
• It was really boring. You know you have a problem when you bore yourself.

We set up contact points. These where people who could call and ask about treatment or how I was feeling. We had five of them and each had a different day. Everyone else was told that they could call if they didn't talk about my health. Each was given a contact point who filled them in on the details. I suppose this sounds harsh or maybe selfish, but is there a better time in your life to be selfish? I think not. In the end, I got more rest, had conversations that were more interesting and enjoyed my time with my friends and family. All of these things improve your outlook and therefore your outcome.

I want to speak a little about depression. While I never really felt sorry for myself, I did have a very bleak period when I had an infection and was very sick where all I wanted to do was run away from home. I was aware enough to realize I was depressed and sought the help of a social worker who pointed me to a Therapist who specializes in Cancer patients. I ended up on Cymbalta, an Antidepressant that works well on Cancer patients and has the extra added side effect of increasing your appetite (also good while you are on Chemo). I continued seeing my Therapist even after Chemo was done and stayed on the antidepressants for almost a year. Really needing some help with depression is not a big deal. Chemo causes physiological changes that can lead to depression and it can take a year or more for the effects of the Chemo to leave your system.

Coping Strategies - My Daughter

First off, I am not a psychologist or therapist in any fashion. I can only tell you what I did and if it worked or not.

My Daughter
My daughter Sarah was 6 at the time of diagnosis so I had a somewhat difficult time explaining things to her. We explained that everyone's body is made up of different kinds of cells that do all the things your body needs. We said:

"Mommy's body has some bad cells in it. Those cells grow very fast and the doctor is going to take them out. I am going to go into the hospital and have my surgery and you can come and see me. After the surgery mommy will have only one breast, but she will get a fake one made of rubber that she can wear. When mommy is all healed, she will start treatments to kill any bad cells the surgery might have missed. The treatments may make mommy very sick, it will make her hair fall out and she might not be able to do all the things that you are used to."

This quote may not be verbatim but it is very close. We didn't feel we need to say more and we then allowed her to ask any questions she wanted. She only had one, "Are you going to die?" I can't even begin to explain how gut wrenching that question was. I answered her honestly with, "I don't know but I am going to do everything in my power to get better." This is one of the things I think we did right. We were honest with out Sarah every step of the way. We took her to meet all of the doctors and let her "approve" them. I am not sure what I would have done if she was really uncomfortable with ones I had chosen.

I was fairly certain my daughter wasn't sure I was going to be me anymore after my surgery. My husband and I decided together not to bring Sarah to the hospital until I was up and walking fairly easily. Luckily the nurses wanted me up and around as fast as possible and it was only one day before she could come and see me. I got up and walked around the hall with her. She climbed in the bed and snuggled with me which was one of those things we did all the time at home.

Sarah was thrilled with the fake boob and wanted to take it to school for show and tell. We thought some of the parents, especially those of the boys, would think this was a bad idea so we passed on it. She did tell everyone we met including strangers about mommy's fake boob. We decided that there was no harm in this and didn't try and curb the behavior. I felt it helped her deal with things.

I had long hair when I was diagnosed but cut it shorter before the initial surgery. I knew I would be hospitalized for four days and would possible not get a shower for a week and I felt long hair would be a drag. I was fortunate that my hair dresser, Ellie, had experience with her mom having breast cancer. She was happy to work with me on my hair. We made a plan to cut my hair a little shorter ever week until I started Chemo. My hair was in a very short boy cut the day I started. We did this so the change from hair to no hair would not be so drastic for my daughter. My husband also made arrangements with Ellie for me to stop by on the way home from the hospital and get my hair washed. This was a great idea. I felt better and I looked normal when I got home.

I planned my Chemo treatments for Monday mornings so that the days I might be the sickest would be days my daughter was at school and her exposure to it would be the least. Our goal was to strive for normalcy. I think we achieved a level of normalcy that was acceptable. Unfortunately, after my first course of Chemo I got an infection which delayed my next course by four days which meant treatments were now on Thursday and my worst days were on the weekend and Sarah got to see me at my sickest. This was a huge disappointment but you do what you have to.

After Chemo started I still picked Sarah up at school everyday. As my hair began to loosen up Sarah would tell the kids on the playground how it came out in chunks. She would have her friends pull out bits of my hair. Children are fascinated by the hair loss and I let them take bits out for two weeks until I shaved my head. The kids then took to rubbing my head. I have no idea why they enjoyed it so much.

The Neulasta injections I needed in order to have my Chemo had some bad side effects. I had severe bone pain for 2 to 3 days after the injection. For my family, where we all pile in the bed and snuggle together, this was devastating. To cope with the pain we had different types of days. No Hug Days for the 2 to 3 bad days. Small Hug Days for the next 2 days after the really bad ones and Big Hug Days for all the others. Sarah would ask "what kind of hug day is it?" On Big hug days we got in all our snuggles. The evening before an infusion was a big snuggle time.

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.

Deciding on Chemotherapy

I will start this post with a truism, "Chemo stinks but the alternative is unacceptable". What I mean by this seems obvious, but I mean this in more than one way. If the Cancer is invasive and your Lymph nodes are involved it is easy to understand the truism. If you where diagnosed with DCIS (Ductal Carcinoma In-Situ), a very early stage Breast Cancer, and you had no Lymph nodes and you only needed a Lumpectomy having Chemo might well be unnecessary.

There is a huge gray area between those two alternatives (not to mention even more advanced Cancers). In those gray areas the alternatives are not Chemo or death, but Chemo or persistent worry about the spread of Cancer. That is like living your life looking over your shoulder and worrying about every little cold or pain wondering if you are sick because the Cancer has gone someplace else. For me living that way would be unacceptable.

I have a 9 year old daughter who is the only perfectly right thing I have ever done. I love her more than I love life itself. At the time of diagnosis she was only 6. She was just forming what will eventually be her earliest memories. The thought of dying and having her only memories of me as those of me being so sick was unacceptable. She was my beacon at the darkest times of treatment.

I, like everyone have people who Love and care about me. My husband's picture should be in the dictionary next to the definition of how the husband of a breast cancer patient should be. My father has had experience with people he cares about getting Cancer; they have all died. My relatives by choice, those people who I consider family but aren't related by blood, love me unconditionally. My daughter needs a mother to help her grow up and to grow up with. Leaving any of these people with the grief of losing me and more importantly the horror of watching me die was also unacceptable.

My living or dying was not the issue. The issue was the impact of a slow painful death on those people who care about me. I have lived through both kinds of loss the sudden and the extended. I can tell you that the memories of my brother who died suddenly are of the young vibrant person he was. Those of my mother who died after a surprisingly short but horrible painful battle with lung cancer are mostly of those last painful days. There is much I would give to have my memories of my mother be also those of a vibrant alive person.

There where many ways in which I was lucky. I found an Oncologist who was willing to have my treatment be a partnership. Instead of saying this is the treatment you have to have, he gave me a list of choices explained what each entailed and told me how much each choice lowered my recurrence chance. I remember leaving the office that day and my husband being very quite. I asked what was wrong and he said something like "I was surprised by the recurrence percentages. I thought it would be zero."

This brings us to another truism, "Your recurrence chance is never zero". This shouldn't come as a surprise. Since one in eight women will be diagnosed with Breast Cancer in their lifetime, your chance of getting Breast Cancer is about 12%. If you can get your recurrence chance to 12% or less you are doing as well or better than most of the population. Without Chemotherapy my recurrence chance was over 30%. The regimen I selected lowered my recurrence chance to about 8%.

So for me Chemotherapy wasn't really a choice, it was a necessity. Taking my thought process to the bare bones. I was not going to let my daughter watch me die. I was going to be there for her High School graduation. I was going to see her get married and I was going to live a long healthy life. I have a pretty harsh view of Chemotherapy even though I feel it saved my life. Chemotherapy is killing you without letting you die. The drugs they use to treat Breast Cancer had not changed is over a decade when I underwent treatment. What had changed were the other drugs they give you that keep you alive.

You may or may not agree with my thoughts and ideas about what drove me to make my decision but I hope you can understand the thought process I went through getting there.

Surgery

Surgery is really the least interesting part of the journey, but the one you should take the most time making decisions about. I wish I had taken more time, but that is water under the bridge, I can only write about my experience and hope someone else gives their decisions more time and comes away happy with those decisions when looking back. Know your options before you make any choices. I can't stress this enough. A few days or weeks won't make any difference in your ultimate outcome.

I was diagnosed on January 7, 2005 via Stereotactic Biopsy. On January 19 2007, I had a Lumpectomy for the initial tumor as well as biopsies on three other "areas of interest" as my doctor called them. During surgery the surgeon found two lymph nodes in my breast tissue (not the sentinel node) that he thought didn't look right. He halted the surgery after removing the nodes and had a frozen section done. The nodes came back Cancerous as well and my surgical outlook changed in what seemed like instant. He had already removed the three other areas two in the same breast and one in the other breast, but the Lumpectomy wasn't done.

The next day when the lab work came back I got my answer. All the tumors in my left breast were Cancerous, the one in my right was not. The final diagnosis: Multifocal Invasive Breast Cancer with Lymph Node involvement. The largest tumor was about 1 cm in size and the total of all the tumors was over 2 cm. The Lymph Nodes meant Chemotherapy the multifocal nature of the Cancer meant mastectomy with Lymph Node removal. Unfortunately the Lymph Nodes removed during surgery rested on my chest muscle and the Cancer had spread to the muscle and more would need to be removed to get clean margins.

I had conversations with my doctors about removing Lymph Nodes. They spoke about the Sentinel Node but thought complete removal was a better option for me. I did not have the knowledge at the time to make an informed decision. With recovery from the first surgery and prep for the second I also didn't have the time to do the research. Also, I think I was somewhat shell shocked and almost blindly agreed to everything.

My surgeon also spoke about reconstruction options and skin sparing surgery. Once again I was so focused on getting rid of the Cancer that I didn't consider reconstruction at all. I said over and over again "I don't care about the cosmetic outcome." To give you some background, I have never been especially concerned about my looks. I didn't consider myself anything beyond so so looking. My body was nothing special, so the cosmetics of the situation were really unimportant to me. That being said, reconstruction is about much more then cosmetics. (see the upcoming post on reconstruction)

On January 31, 2005, I had a Mastectomy with part of the chest muscle removed and 12 Lymph Nodes removed under my arm. This surgery had a less painful recovery than the Lumpectomy which was unexpected for me. As with any surgery the worst part of recovery was the surgical drains and fatigue. I was hospitalized for three days total and was back at work part time after two weeks. You need to fully heal after surgery so Chemotherapy doesn't start for 6-8 weeks. I recommend choosing and speaking with an Oncologist before the Mastectomy. I did this right and felt great about those decisions when time came for the surgery. I do count myself as lucky. I did not need any Radiation Therapy.

No matter what your surgery expectation is, the surgical outcome may be different when you come out of anesthesia, then what you were told going in. No scan or imaging procedure is perfect. The surgeon doesn't know what he/she will find until they get inside and they do not know if you have lymph node involvement beforehand. That being said, you need to have a surgical plan laid out with your surgeon before anything happens. Below are some questions you should have answered before surgery, although that is still no guarantee things will go as planned.

1. Are there other areas in the breast that need to be checked besides the primary site?
2. Will there be Lymph Node removal? Push for removing only the Sentinel Node. This is the first node going from the breast to the the nodes under your arm.
   
3. If the Sentinel Node is Cancerous what do we do about the rest of the nodes?
4. Ask about the side effects and repercussions of removing all the nodes under your arm.
5. Is the Cancer advanced enough to warrant removal of the Nodes in the chest area?
   
6. If a Lumpectomy is planned and the Lymph Nodes are Cancerous will this lead directly to a Mastectomy. This should not be automatic, it is one of the choices you have a right to make for yourself.
7. If I will be having Chemotherapy, should I have a port placed at the time of my surgery. If so, what are my choices of location for the port. Ask about the side effects of using and clearing the port. This is an often overlooked point.
8. What about Radiation? How does it effect reconstruction? Speak to a Plastic Surgeon about this not just the General Surgeon.
9. Can I do the Mastectomy and the reconstruction at the same time? Usually yes. It will take longer to arrange and the overall surgery will take longer but I have seen it done. And really isn't one surgery better than two? If your surgeons won't do this find different surgeons.
   
10. There is Cancer in one breast. Should I have both removed? This is one of the hardest questions there is to answer. The answer depends on many things including your age, marital status and whether or not you have/want children.
11. What are my reconstruction options? Do not assume you have to have an implant. There are several "flap" procedures you can have that use the fat from other parts of your body.
12. If I choose a tram flap procedure do I need to give up my abdominal muscles? You do not. There is a free or "Deip" flap procedure that is more involved has a slightly higher chance of failure but leaves your abs in tact.
13. If doing reconstruction with Mastectomy should I have skin sparing surgery? After surgery, you breasts will look most "normal" with skin sparing surgery. You won't have nipples and aureoles but those can be added later or tattooed on. I have a friend with Celtic Knot Tattoos.
    

I realize this list seems a little overwhelming and it is by no means complete. Really the whole experience is overwhelming. If there is anything you take away from reading this blog it should be this: You have time to make the correct decisions for you, to arrange surgery to your ideals not someone else's, to consult with all the different types of specialists you feel should be involved in your treatment and get whatever second or third or fourth opinions that you want.

Diagnosis

In January 2005 I was diagnosed with invasive multi-focal Breast Cancer. During the biopsy they found two cancerous lymph nodes and three separate tumors. At that point everything became a blur. Everyone from my Surgeon to my Oncologist to my family to even myself decided the Cancer needed to be removed as soon as possible. I have always been pragmatic and I felt that the cosmetic result was not important. In truth I still feel that way. So two weeks later I had a Mastectomy with part of my chest muscle removed and the Lymph nodes under my arm removed and checked as well.

As I was preparing to start Chemo, I made some important decisions, mostly about how I was approaching this and not so much about treatment. I was not going to do anything that didn't help me get better. After Chemo was done and I was feeling more like myself I would have plenty of time to feel sorry for myself if I still wanted to. I have never said "Why me?" one in eight women will be diagnosed with Breast Cancer, "Why not me?". By saying "Why me" you are really saying it shouldn't be me it should be someone else, and I wouldn't wish this on anyone.

And so, the adventure began. I had a 6 year old, to whom, it was difficult to explain the situation, no family besides my husband within a two hour drive, a full time job and as I learned wonderful friends and a community that rallied around me with a vigor that I found amazing. I joined a support group which became a lifeline for me and underwent Chemotherapy trying for as much normalcy as possible.

There are several things about a Cancer Diagnosis that no one ever seems to mention so I will mention them here since I think they are important.

• There will be people who are uncomfortable with the illness and you may lose some people who can't deal with it.
• You will have the same conversation with everyone, over and over again. People seem to think that you lose all other interests and become completely one dimensional. You need to be the one to redirect that behavior.
• People need to help you. It makes them feel as though they are participating in your recovery. Those that care about you scared and needy too.
• You may be the one diagnosed with Cancer but it effects your family as well. The whole family is under stress. They will be taking on more responsibility while you are undergoing treatment, not to mention their worry.
• Do not underestimate the financial impact of cancer treatment. Even if you have insurance do not think that treatment is "free".
• Most importantly, your treatment is up to you. If your doctor tells you there are no options except the one they think is right, find another doctor. You should be involved in the decisions, it helps you feel more vested in the outcome. Treatment and recovery are activities you therefore need to be an active participant.