Holding On

Waiting for the biopsy wasn't as hard as I thought it would be. Everyone I ran into said that obviously the doctor wasn't concerned so it was probably just a formality. I really thought that too. Logically, why would I have cancer? I had done everything right. I had gotten pregnant early (before 25) and I had nursed all three children for at least 12 months each. There was no family history. I was 42. Of course it wasn't cancer!

I took my mother to the biopsy because she really wanted to be included, and my husband went as well. I was having a core needle biopsy, so I was told to strip and lay face down on a bed with two circles cut out. The doctor had given me a Valium before the procedure so I wasn't that nervous. However, even though they numbed the sites where the needles were going in, it was extremely painful. I wasn't prepared for it and tears instantly sprang to my eyes. It felt exactly like it sounded--a four inch needle being inserted into your breast hurts. And of course she had trouble finding the spots she want to biopsy so there were several punctures. I was really crying by the time it was over, and I felt very betrayed. Why hadn't she told me this would hurt?? I could barely stand up. I was really beginning to hate this doctor. When I left I was told I would have the results in a week, and that they would call me. 

Meanwhile, I had gone to see the gallbladder surgeon back in December and she said I definitely needed surgery to remove my gallbladder. She wanted to do it before Christmas but there was no way I could do that so it was scheduled for the 24th. It would be outpatient, and I was to have three laser incisions in my stomach. The doctor told me that afterwards I would feel like a truck ran over me. Great. 

So there I was after the biopsy and my left breast became horribly bruised. Like--omg gasp what happened!?!-- bruised. Completely purple and green. Imagine what the doctor and nurses thought when I went for the gallbladder surgery, which incidentally was the day before I was to get the biopsy results back. They were all shocked by the sight of my breast, which didn't exactly instill any more confidence in the breast doctor. 

The gallbladder surgery went as fine as surgeries can go. There were no complications and I was sent home to rest. That was Thursday January 24. January 25 was the day I was supposed to hear from the breast surgeon. Did I have cancer? In a way, I was actually glad I had had the gallbladder surgery the day before because I was in too much pain and on too many pain pills to be nervous about the cancer results. But needless to say, while I tried to keep up a good front for my family, I was still sick with fear. 

The next morning, Friday,  I waited Ito hear from them in bed. I was very sore from the gallbladder surgery and couldn't move around. Finally, I couldn't take it anymore and I called the office. It was around 11:00. I got the receptionist and explained that I was supposed to get my biopsy results back. She told me to hold on and then came back on the line. She said, and I will never forget it, "well, your left breast is fine but your right breast has cancer. Looks like you need to come in today and talk to Dr. Robbins."

How do I say what was going through my mind? A million things. But honestly what I remember is saying I can't come in today. I just had gallbladder surgery and I can't get out of bed. She then said to come in on Monday. I weakly said okay and hung up. Now, mind you, I knew this wasn't how you were supposed to find out you had cancer. While I had been clueless and naive in all the things that had gone on before, I knew this was very very wrong. I knew I had been treated abominably. But what could I do?

Far From Center

I completely dropped the ball on keeping up with this, but I think it's important to have a record of what went on so I'm screwing my courage to the sticking point and soldiering on. 

I went alone to the breast doctor. I really didn't have any idea what I was doing. (If anyone ever has to go to a doctor's visit like this, bring someone!) I brought my mammogram results with me. The doctor had me wait two hours. Yes, two hours. By the time I saw her I was furious, and all she said was she had to tell someone before me they had cancer. That was sad, yes, but it didn't explain why I had to wait two hours. 

She looked at my results and said she saw some calcifications, but she didn't explain what that meant. Then she said she needed to do a biopsy before she could tell anything definitively. There was something suspicious on my left breast, too, so I asked if she could biopsy that also. She told me to schedule the biopsy on the way out. Keep in mind I had no idea what was going on, and I had no idea what a proper time frame was.  I was told that the first available date was five weeks away. Yes, I said that right. Five weeks. How was I supposed to wait five weeks with this hanging over me? In my head, it obviously meant they didn't think anything was wrong, or else it would have been scheduled earlier. Right??? I had no idea that cancer patients usually had a much shorter time frame, usually two weeks start to finish. It went like this: find something suspicious, biopsy it, have surgery. Boom. Done.  I was at the one week mark already. I didn't know any of that, though. All I knew was I didn't like this doctor and I didn't think they respected me or my time. However, I didn't know what to do. I thought I was stuck. So I went ahead and scheduled it. 

I remember thinking to myself,  just hold on. You can do this. You are strong enough. I started praying and praying for God to give me strength to get through this. I thought I had swirling before. Now I couldn't even hear myself think. There was a humming noise in my head. I was far from my center now, and just trying to hold on. 

The Swirling in my Brain

In December, my husband's paternal grandmother finally passed away. It was a blessing because she had been bedridden and vegetative for years. She made my husband the executor of the estate, even though her son was still alive. Her son was that bad. She would never have trusted him to follow her wishes. However, she had a relatively large estate and and there were many many things that needed to be done. The funeral needed to be planned. Appraisals needed to be done for all the belongings in the house. A new home had to be found for my husband's father (he was living in her basement). And I already had a lot on my plate. So as you can imagine this just added to the stress we were under.

Every night I would close my eyes and things would just swirl around me like a tornado. Everything felt out of control. My mother did not feel she had anyone to talk to about my father so she would call me, sometimes 3 times a day. It was to tell me the new horrible thing my father had done. While he couldn't walk consciously, for some reason in the middle of the night he would get up and take his pajamas off and pee all over the place and then not be able to get back to bed. He was a dead weight so if I couldn't help she'd have to call 911. One time he got stuck in the bathtub! I told her that she needed to quit telling me all these horrible things. I said I knew she needed to talk about them but couldn't she find someone else? I begged and begged her. She found someone from her church to talk to but still kept telling me what he was doing. She said she couldn't help it. The swirling in my head grew faster.

Adding to the stress our oldest daughter was a senior in highschool. Her school did not have a good college counseling program. The highest achievement they expected was to get into UGA. But she didn't want to go there. Since we got no guidance from the school I was constantly racking my brain trying to think of places she could apply. I wanted her to have that "aha" moment of walking on campus and knowing she had found the right school. I thought of App State in NC as a possibility and made an appointment to take her there Monday, December 8. We were pushing it time wise but her favorite school so far was Rhodes College in Memphis and it was very expensive.

The day before we were going to leave (that would be Sunday, December 7, 2007) I was taking a shower and felt a thickness in my left breast. It felt like it was about 2 inches long and about 1 inch wide. I knew it wasn't supposed to be there but I also knew it could be absolutely nothing. I almost laughed. With everything we were going through there was no way I could have cancer. This was surreal, though. I figured it was just more crap I had to deal with. Since my daughter and I were leaving very early Monday morning I had my husband call the gyn to make an appointment as soon as possible. I wasn't stupid. I knew that if something was found, catching it early meant a better chance of successful treatment. I was proud of myself for taking care of it and not putting it off.

So I didn't tell the kids. I tried not to think about it. We drove to App State and did not fall in love with it. I had an appointment with the gyn the next day, who felt it and said she wasn't sure what it was. I needed to get a mammogram and a sonogram. It was scheduled for later in the week. I had no idea what to expect. Would I know right away? I assumed I wouldn't because the people there weren't doctors. I was 42 so I had had one baseline mammogram. I didn't even remember how it worked.

The swirling in my head was at a fever pitch. I was trying very hard to be calm and I kept telling myself there was no way it could be anything. I was at such a low risk for breast cancer: no family members, I had gotten pregnant early, and I had nursed all my children at least 12 months each. I had done everything right. There was no need to worry. I went alone to my mammogram and was completely clueless. A sign on the wall said not to ask the technicians anything so I didn't. They did a mammogram and then a sonogram. Then I was told I needed to see a breast surgeon. The doctor could interpret the findings. Well okay, that made sense. I didn't get a rush rush feeling. I got an appointment with the doctor for next week and tried to put it out of my head. That was Thursday or Friday.

Early Sunday morning I woke up in a great amount of pain in my stomach. On a scale of 1 to 10 it was a 9. I kept trying to breathe through it. I hoped it was gas. But it wasn't getting any better. I finally had to wake up Elliott. The pain was becoming unbearable. I honestly couldn't believe it. My mind almost refused to comprehend what was happening. Hadn't we gone through enough? I had just found a  lump. Our middle child had failed French with no remorse. Everything was awful, and now this???
The pain was not getting any better so I had to go to the emergency room. I had gallbladder disease. I needed surgery. All I could think was you have GOT to be kidding me. I was given strong pain medicine and told to eat a very bland diet and they would schedule the surgery as soon as possible. By now it's the middle of December and I still had Christmas shopping to do. I did my best to hold it together but the swirling in my brain was so bad a hole in the earth was forming. I didn't want to fall in that hole. And I still had to go see the breast surgeon.

Down the rabbit hole

After Disney, things didn't change much. My father spiraled further down into dementia. He needed a wheelchair which made it even harder for him to get out of the house. My mother had to hire people (finally) to come to the house to help take care of him. At first it was a few times a week, but it gradually moved up to almost all the time, except at night. He needed help with everything--things you don't think of when something like this happens. He couldn't brush his teeth, or go to the bathroom, or hold a drink, or get dressed, or anything without help. Mom was getting very worn down. My brother and I tried to help but it was tough for us too. It was just awful.

Making things worse, we still had the bugs from hell infesting our house. They were so bad we had to spray Bengal spray in the basement before people came over so they wouldn't fly in people's faces. I learned to leave on one light overnight so they would be drawn to it and I could vacuum them up more easily.  Plumbers and exterminators kept coming out but to no avail. No one could figure out where they were coming from.

At this time our middle daughter started a course of medicine to clear up her skin. It was the summer before she started highschool and we wanted her to be able to start without having to worry about her skin. We knew it was a strong medicine, so strong in fact that even though she was only 14 she had to get a pregnancy test each month to prove she wasn't pregnant before getting her prescription filled. What we didn't know was that one of the rare side effects was a type of personality change. She had been a reader, spending hours and hours reading everything she could get her hands on. She didn''t particularly talk back to her dad or me. She was pleasant, smart, charming, friendly, enthusiastic about new experiences, and generally a joy to be around. All of that changed right before high school. She started talking back to us, yelling at everyone in the house, and slamming doors. At first we thought this was typical teenaged angst. Puberty. She seemed to hate us. We never even thought about the medicine.

Her grades were bad. This was a girl who had made almost all A's and was very very bright. She was quite capable of sailing through her freshman year with all A's. She had never even made a C before. Her grades started getting really bad. Like C's and D's bad. I went to the school to talk to her counselor and her teachers. What in the world was going on? Why was she doing so badly? The teachers at her school were not exactly caring. "IB is hard, she's making C's, she's fine" was the answer I got. There was no concern over the fact that she wasn't even close to living up to her potential. It was very frustrating. We had her tested for drugs without telling her. No one really thought that was it, but we didn't want to be the kind of parents that were oblivious. She was not on drugs.

I took her to a counselor. The counselor told her to pull up her grades so we wouldn't bug her. She said that if she got good grades she could get away with anything. Then she told our daughter that we were helicopter parents and we needed to let go. I'm good about seeing my faults but helicopter parenting was not one of them. Her entire personality had changed. Finally, the doctor that had prescribed the acne medicine noticed her personality change. He immediately took her off the medicine. That was around October/November. We saw some improvement, but then something else happened that took our attention away.

A Break with the Mouse

In the midst of this we decided to take our family to Disney World. Some people think Disney is fun; some people love Disney; our family adores Disney World. We totally think thousands of dollars spent in a made up world for a week is a good investment. To us, Disney represents a whole week where everyone gets along, there is no complaining, everyone is happy, and everyone is positive. Who wouldn't spend money to achieve that? And the thing is, looking back, we could have used that money to experience some place like Europe or San Francisco but I don't regret a minute of it.

Disney is still fun even when it's raining.

Half the fun Of Disney is in the planning. When we lived in Jacksonville, Florida we bought a season pass for Florida residents. It gave us deals not available to the outside world. For our youngest son's 1st birthday we stayed at the Wilderness Cabins but he got sick and we had to leave. This is how awesome Disney is: I called and said we had to check out early and why, and not only did they not charge us for the unused days, they sent us deals for the Polynesian a few weeks later. So we went again and stayed at the the Polynesian, a dream of mine since I was a little girl. It was everything I hoped it would be. Our memories from there are priceless. The Polynesian has 2 queen beds and a day bed so there was tons of room. The pool area and grounds alone are what normal resorts are made of. You could never go the parks and still have a blast. Anyway, in our planning for this new trip we discovered that Port Orleans Riverside had a trundle bed so we could all fit in one room. Since we were no longer Florida residents, we really couldn't swing anything like the Polynesian.  We booked a room at the Port Orleans. When we got there, it was obviously not as nice as the Polynesian but it was charming and the grounds and pool were beautiful.

Everyone in Animal Kingdom

The first day we left super early and got back really late. We were all exhausted and dragging when we approached our room. When we got close we could tell the lights and tv were on and there was something in the window. At first, the kids were confused--we know we didn't leave the lights or TV on. The stuffed animals that we had brought had been set up to watch the Disney channel--Stitch was holding the remote. Other ones were swinging in the window blinds.The housekeepers had set this all up as a surprise. Can I say how much I love Disney? What an awesome ending to a great day.

N and E with Darth Maul--a little creepy!

Things like Disney kept our family sane during this horrible time. We could all forget that my father was slowly dying and losing himself every day and that our house was filled with disgusting bugs that we couldn't get rid of. We know Disney is made up. We know that real Floridians disapprove of the mouse. But for me and my family, there is no better value than a week of happiness in the Florida sunshine.

more of the same

My sister graduated from college that May. Dad came to the ceremony, gray and shaking, but still having a grasp of what was going on around him. He sat far away in the shade, just patiently waiting for someone to come get him. Growing up, he was not the most patient man and if I'd have to guess, I would have thought he would be a mean and grumpy old person. The thing is though, he was so gentle and quiet while all of this was going on. He never lost his temper. Me, I would have ranted and raved and shook my fist to the world at the unfairness of it all. He was just so brave. He knew what was coming and he met it with dignity.

Since it was now May, you know what had come back again? That's right, sewer flies! It was our second summer with them. I called the big pest control companies like Orkin and every plumber I could think of. Every single guy thought he had found the problem-We weren't using the tub downstairs enough, the hose from the washer didn't have a seal on it, the bar sink wasn't working, etc. All of these problems were believable because of the true awfulness of the house. So they would "fix" it and for one or two days things seemed to improve. We kept at it until fall came. That made the score sewer flies  2(summers) and us 0.

We were still working on improving the house. Every single light fixture was changed out. Every single surface got the wallpaper removed, and every single surface had to be repainted, including ceilings. We changed out all of the old fake brass doorknob. We stripped down the fireplace to the studs and built it back up again.

The collapse

One day, when our middle child was in 7th grade, I was driving out of our neighborhood to pick her up after school. At a stop sign, there were 5 cars ahead of me and I could see a fire engine and people milling about. I wondered what was going on. When I got to the intersection, I saw an old man lying in the street with people standing over him. It. Was. My. Father. I instantly pulled into a driveway and jumped out. It appeared that Dad had been walking (?) and collapsed and people had called the police and stopped to help. He was on the ground and the fireman was trying to get him to answer questions. I explained who he was and who I was and I asked Dad if he knew who I was. I'm not sure if he recognized me.

They helped me put him in my car and I drove home with him. A kind neighbor recognized me and offered to get my daughter. I called Mom at work and told her about Dad and said she needed to come right away. Another kind Samaritan followed me home and helped me get him into my house. I plied him with liquid because the fireman thought he might be dehydrated. Dad told me he just wanted to come and see me. That was tough to hear. He had an old picture book with him for Conrad, as an excuse to come and see me. What we think happened was that he found the book and thought Conrad had left it, so he needed to return it to me. We lived about 3 or 4 miles away, way too far for him. Heck, walking to get the mail was too far for him. And, of course, Conrad was in third grade.

It was decided that Dad could no longer be left alone in the house while Mom worked her part time job. I agreed to stay with him one day a week. He went to adult day care the other days. I was very glad he wasn't on his own anymore. I had been scared something horrible would happen, and something did. I was just glad he would be all right.