First I will explain what I know about inflammatory breast cancer (IBC). IBC is a rare and aggressive form of breast cancer. I don't know a lot about the physiology of it, but the symptoms are usually much different from most other forms of breast cancer. It usually can not be detected by a mammogram and usually doesn't present with lumps (at least not until it gets into the lymph nodes in and near the breast). It usually starts off looking and feeling like a bruise on the breast. The affected breast may become enlarged and eventually the skin on the breast my develop a dimpled, orange peel-like appearance. The nipple may also become inverted. From what I have read, most people diagnosed with IBC have a life expectancy of about 6 months because it is such an aggressive and fast spreading cancer, but it is very possible to survive if it is caught early enough and if the treatments are effective.
I believe it was some time in the fall of 2004 that my mom started complaining to me about a mysterious bruise on her left breast. She said it was just a bit sore and she wasn't too worried about it at that point. She figured she must have somehow done it in her sleep.
A few weeks later, her breast was still sore and the bruise had not gone away so I encouraged her to go to the doctor. Even then, I was concerned it might be breast cancer, but I didn't worry too much since at the time I thought people usually got lumps with breast cancer and my mom said she had no lumps and had just had a mammogram a few months earlier. She went to her primary care provider and he said it was probably an infection and gave her antibiotics.
After taking all of the antibiotics, her symptoms still hadn't gone away. She was tired of the embarrassment and didn't feel like going back to the doctor again for it so she put it off for a few weeks even though I told her she should probably go right back since it obviously wasn't an infection or it was a really bad infection that needed more antibiotics. She just brushed it off.
When she finally went back to her primary care provider, he found a small hard lump in her breast area but said he did not think it was cancer. He said she probably just had a calcified duct and refereed her to a breast specialist.
The breast specialist did a biopsy just in case but he didn't think it was cancer either. When the results came back, they said it was cancer, but it was a very mild and treatable cancer and was no big deal. My mom got referred to an oncologist who did more tests.
After a few weeks of trying to figure out my mom's exact diagnosis, they finally told her that she had inflammatory breast cancer. At that point they told her that she would need chemotherapy and may need surgery and radiation as well. But they still were acting like it was no big deal, and that she would be ok. I was devastated to find out my mom had cancer, but was reassured that everything was going to be ok because my mom said that the doctors said there was a lot they could do for her and she was going to be fine. I looked IBC up on the internet and found a different story. It said that most people only live six months after being diagnosed. I decided not to tell my mom this, since she had such a good attitude about it and I didn't want her to be upset or stressed. I just hopped that her doctors were right and the article was wrong.
By the time she got diagnosed it was February 2005 and in March she started chemo. She was told she would probably lose all of her hair after a few treatments. At first she felt great. She said she didn't even feel like she had cancer.
Her hair stared to fall out after a few weeks or so as predicted, slowly at first, but then it started coming out in fist fulls. She asked me to cut her hair as short as I could so it wouldn't make as much of a mess in the bathtub. I felt so bad as I was cutting her hair which was falling out in huge chunks as I was cutting. My mom thanked me afterward not just for cutting it, but for not being freaked out by it. I offered to shave my own head to make her feel better about being bald but she begged me not to because she loved my long hair so much so I didn't. She was very self conscious about being bald and got two wigs, some hats, and some scarfs for her head. She would let me and my dad see her bald head but no one else. During the summer, the wigs became too hot and itchy so she mostly wore sun hats outside. When my husband (then boyfriend) would come over she would scramble to get a scarf on her head so he wouldn't see her. I told her he didn't care but she still didn't want him to see.
The chemo made her feel tired and fatigued but she still was quite active and went for lots of walks with her dog and went to the mall and so on. She tried not to let the cancer get her down. She believed that the key to survival was having a good attitude and staying positive and living as healthy as she could. She tried to exercise and eat a lot of fruits and vegetables and stay away from junk food. She bought a bunch of books on breast cancer and a cook book for people with breast cancer. She ate a lot of foods with antioxidants and drank a lot of water. She was determined to survive.
After her last chemo treatment, her doctors gave her body a short break and then decided to do a mastectomy to be sure all the cancer was gone. They gave her the option of removing both of her breasts so that it would be less likely the cancer would return. My mom decided this would be the best idea because she just wanted the ordeal to be over with for good.
I think it was in the fall that my mom had her double mastectomy. My dad and I stayed in the waiting room the whole time she was in the OR. I couldn't help but fear the worst, that there might be a complication during surgery and she might not make it. I was a wreak but I kept it all bottled up for my parents sake. After a few hours the doctor came out and told us that the surgery was a success and mom was just waking up. I was so relieved! Soon we got to go see her. She looked terrible and was pretty out of it but I knew she was going to be ok. They kept her over night and released her to go home the next day.
They said they removed both breasts and five lymph nodes in her left armpit area. They would be checking both breasts and the lymph nodes for cancer and then they would make the decision whether to do radiation and more chemo or not. The results came in and they found cancer in 3 of the 5 lymph nodes they took out. I thought for sure they should do more chemo and some radiation but they had a meeting and decided that they got all the cancer and no more treatment was needed. They told my mom she was cancer free and that if she started not feeling well again they would do more test but they anticipated she would make a full recovery and wouldn't relapse.
I was very happy that it looked like my mom was all better and was going to be ok, but in the back of my mind I still had my doubts. I still had anxiety about the cancer coming back. I told myself that I was just being a worry wort and tried to let those thoughts go but it was hard because I was still so nervous that the doctors may have made their decision too hastily.
My mom felt great for the next few months. Her hair started growing in again. It came in curly at first even though her hair had been strait before, and it was gray instead of brown. But she was happy to have it back.
Soon though, she started getting some tingling and swelling in her left hand which was the side that the lymph nodes had been removed from. The doctor said that this was a normal side effect of her surgery and it was due to the fact that without the lymph nodes in her armpit, the lymph fluid in her arm wasn't flowing as smoothly and was putting some pressure on her nerves. They told her to try light exercise and not to lift anything too heavy with that arm.
My mom tried light aerobics, yoga, and even got a bicycle peddle thing that she used with her arms to work them out. She only got worse. Her hand got so swollen she had to have her wedding band cut off. At that point the doctor referred her to massage therapy for lymph massage which he said should take care of it.
Mom went regularly to massage therapy for several months and only got worse. She even got a machine she could put her arm in to do lymph massage at home. She had to keep her arm wrapped up to keep it from swelling more. Her whole arm was huge and she was now in unbearable pain and was slowly losing the ability to move her hand and arm. Soon it became completely numb except for the pain which was now mostly focused in her shoulder area. The "dead" arm was so heavy that it pulled out of her shoulder socket. She would be in so much pain sometimes she would almost be in tears.
All this time her doctor kept telling her this was all side effects from the surgery and kept giving her narcotics, nerve pain meds, and valium for the pain which didn't help much. She had to start sleeping in a recliner sitting up because it was unbearable to lay down in a bed. She would spend most of the night watching tv since she was in too much pain to get much sleep. She lived like this for months and hardly left the house except to go to doctors appointments.
Finally she couldn't take it any more and convinced her doctor to schedule her for an MRI. The earliest appointment they could get her was about a month away. She was in so much pain one day that she called her doctor begging to have the appointment moved up. He said he couldn't move it up but she could go to the ER and have it done.
My dad took my mom to the ER thinking that her doctor had called them ahead of time and told them she was coming to get an MRI. When they got there the ER doctor told my mom that they didn't usually do MRI's in the ER (WHICH IS BULL!) and my mom started crying. He caved in and said he would go prep the MRI machine but my mom was so upset and embarrassed that she made my dad take her home.
When she finally got the MRI a month later the results were devastating. Not only was the cancer back, but it had spread to her shoulder (which was what was causing her so much pain and was blocking the flow of lymph out of her arm), her spine, both lungs, and her liver. I figured this was pretty much a death sentence but Mom assured me that the doctors were still hopeful and would do everything they could and that she could still beat it. I was pretty pessimistic but I knew I had to keep it together for Mom and for myself. I knew there was no point in being depressed about it and letting it ruin my life. I just had to hope for the best.
Mom started chemo again. This time they tried a different type of chemo in the hopes it would work better then what they used before. She didn't loose all of her hair this time, but it thinned out a lot and she got terrible bone pain and mood swings from it. I tried to act as if life was normal and not dwell on what was going on thinking that would be what was best for everyone. But I did try to spend more time with my mom and keep her company since she was stuck in that chair so much. She told me she really appreciated that.
One morning in November 2006, I was downstairs (I live in my parents basement) eating breakfast and I heard Mom calling for me. I rushed upstairs just in time to see her slump to the ground in the hallway between the room were she had been staying and the bathroom. I asked her if she was ok and what was wrong and she just kept saying "I don't know," over and over and seemed very disoriented. I called 911 and told them that my mom fell. I was still in shock and trying to grasp the situation so all I could think of to say was that she fell. I told them her age and that she had cancer and that she seemed confused and they sent an ambulance. I rode in the front of the ambulance and my dad who had just gotten home after the ambulance arrived followed in his car.
After they did a few tests they told us that she had some blood clots in her legs from being sedentary, and some had moved up into her lungs. Thank goodness they were small or she would be dead. The ER doctor questioned my mom who was now lucid. He asked her about her cancer and asked how long she was given to live. My mom shot me a very sad and concerned look. She had never told me that they actually told her her life expectancy. I could tell she didn't want to answer the doctor in front of me but she reluctantly replied that her oncologist gave her one year. I turned and looked away so that she wouldn't see how upset I was and did my best not to cry. I still don't know if that was one year since she was originally diagnosed or one year from the time they discovered the cancer came back. I suppose it doesn't matter.
They gave her lots of blood thinners and kept her a few days in the hospital. When she went home they told her she had to have injections in her belly for at least six months. I gave her a few of the injections but my dad did it most of the time since after that incident he retired early to take care of her. I felt so bad for her because her whole belly was black and blue from the shots and soon became hard with scar tissue.
Soon after she started feeling better from the blood clot incident, they decided to give her radiation in her shoulder where there was a huge tumor which was causing most of her problems. The radiation didn't get rid of the tumor, but it shrank it and broke it up. She immediately started feeling less pain and her arm shrank back to normal, although it was now quite thin and frail from muscle atrophy. It was too late to save the feeling in her arm though because it was now permanently paralyzed.
They also gave her another MRI to see how well the chemo was working. Miraculously, the cancer in lungs was completely gone! However the cancer in her liver was worse. They decided to switch chemo drugs to try and battle the cancer in her liver. She was supposed to get a biopsy of her liver, to find out if it was breast cancer that spread there or if it was a separate liver cancer so that they could figure out what the best treatment would be. Mom was all set to get it done but chickened out last minute and they told her she didn't have to do it.
Before each chemo treatment, my mom always had to get blood work done to determine if her liver was healthy enough to handle the treatment. There were several times they had to postpone chemo to give her liver a little break because her blood counts weren't good enough.
During this time she also developed a wound under her arm from the radiation that would not heal right because of the chemo. It was like a burn. It never bleed, but it would leak lymph fluid everywhere and Mom had to keep a changing the bandages because they would quickly get soaked.
Around march of 2007 I started to notice that Mom's skin looked a little yellow and I told her I thought she might have jaundice. She was really surprised by this. I guess her doctors had not said anything to her about it but they must have noticed since they were always saying that they didn't like her blood tests.
She was still doing pretty good besides the jaundice at that point. She was just very tired and weak.
It wasn't until late April that she started to take a turn for the worst. She started acting a little more confused and she would have dreams and wake up thinking they were real. She would also forget things easily. It was like she had the early stages of dementia. It was at this time also that her doctors started thinking about changing her chemo again to try and save her liver.
When mothers day came in mid May, she was extremely weak and had very little appetite. Most days she would only eat one banana the entire day.
The day after mothers day I was due to start a week long class at the community collage to become a certified life guard. I went to my first day of class which was several hours long. When my dad came to pick me up he said Mom wasn't doing too well and he was going to take her to the ER as soon as he dropped me off at home. When we got home Mom was clearly very confused. They soon left for the ER and I stayed at home.
When my dad got home later that night, I could see in his eyes that things were not ok. I asked him how Mom was and he just said "It doesn't look good." He said that her potassium levels were very high. I asked him if I should keep going to my class or if I should just drop out and try to get a refund. He said it was up to me but I figured it was best to drop the class because I was too worried about my mom to go to class anyway and I didn't know what was going to happen.
The next day my dad went back to the hospital and I went separately with my boyfriend so that if I got one of my headaches (see my first post in this blog) Dad wouldn't need to leave to take me home. When we got there, she was so much worse than I expected. She was in the ICU and she was barely conscious. She recognized me, my dad, and my boyfriend when we got there but she seemed very confused and would drift in and out of consciousness constantly. When she was asleep she would do this loud snore/moan that I knew was a death rattle. Sometimes she would wake up and start mumbling about nonsense and then slowly trail off and go back to sleep. Her skin was very yellow in color and cold to the touch even though she was dripping wet with sweat. He belly was so bloated it looked like she was 8 months pregnant.
When the doctor spoke to us, he said she was suffering from liver failure and that there was nothing they could do but make her comfortable. He gave her two weeks to live and offered to put her in a hospice room so that my dad could be more comfortable while he stayed with her and she could die in a more peaceful atmosphere. We decided that would be best and a few hours later she was moved to a nice room that resembled a nice hotel room.
I had hopped that Mom was too out of it to realize that she was dying, but I was extremely upset when she said something to my dad that implied that she knew. She said "I know I am near death," and then said something about getting me and my boyfriend out of there because she didn't want us too see her like that. Then she trailed off and went back to sleep. My dad didn't seem to understand what she had said since she was muttering and he was hard at hearing. He probably thought she was just babbling more nonsense. I'm glad he didn't hear her because it just would have upset him too.
To my horror I could feel one of my headaches coming on after being there for a few hours. I knew I had to get home and lay down or I would end up in the hospital myself so I asked my boyfriend to take me home. Before I left I went to my mom's bedside knowing this might be the last time I ever see her alive and simply said "You get better ok?" She just mumbled "ok". I didn't want to say goodbye because I knew I would start crying if I did and I didn't want her to worry about me.
Despite the emotional hell I was going through, I managed to get some sleep that night. I woke up at about 2:40 am to the phone ringing. I knew right away she was dead. I picked up and Dad told me Mom had passed away peacefully a few minutes earlier. She was only 53 years old.
Dealing with the death of my Mom was the hardest thing I've ever had to do. Even though I fought with her a lot, we were very close and she was my world. If my husband had not been there for me when she died, I would have fallen apart and I probably would not wanted to go on living. I still break down and cry from time to time because my mother is no longer here. She didn't get to see me get married, didn't get to see her grand daughter, and didn't get to see me cured of my horrible headaches. All of those things would have meant the world to her and she was robbed of them.
To everyone reading this, I would like to say: take care of yourself. Get checkups, go to the doctor if you think something is wrong, and if you know there is something wrong, don't rest until the doctor takes you seriously. I truly believe my mom would still be alive today if her doctors had taken her seriously. I feel guilt every day, that I did not force her to get a second opinion and that I didn't go with her to her doctors appointments and bully the doctors into getting her tests. I left it up to her because she was an adult and I thought that she knew what was best. She didn't and now she's dead. There is a whole in my heart that she left that can never be filled.
