Post surgery, contact with family and friends; random thoughts.

A question asked was why I chose social work when I left music. My father was a social worker. I loved hearing his stories visiting families and working with gangs. Later he worked in training for the Department of Public Social Services. I think he always liked his work.  But I think he was very tired of the politics of it all and decided to retire early. Though I've had health issues when I retired, I also had a hard time with the politics of it. I think most workers would feel this way if it was constantly in their face.

Another question  about this most recent surgery was what was I thinking about before going under anesthesia. Well, I wanted to check out the surgery suite. They asked me to slide over onto the surgery table. What struck me was how narrow the table was and I wondered if someone was really, really big, what did they do?  They said the table works for people up to 1000 pounds. Then they had a discussion that they had a couple of tables that didn't go that high.  I asked the nurse anesthetist if I wouldn't knock out and she assured me that this was not going to happen.  She was right because next I remember talking to my friend Janet who was with me. I do remember that the cancer surgery I had 3 years previously that I was going to stay alert in surgery as long as I could. I checked out all corners of the room. The surgery suite was small, it had a lot of equipment, I think a counter and lots of surgery tools.  The room was white and the lights were very bright. It was also quite cold. They covered me with heated blankets which felt wonderful. Though I think I stayed awake longer,  I remembered being in recovery as my next thought. In other words, I didn't stay awake.  Part of this question really had to do with sharing my deepest feelings going through me at the time.  I would, but that isn't when I had them.  I was just focused on getting through it.

I know some people feel this is a negative way of dealing with this.  I don't think so.  I have been told, "Oh, you are going to be okay".  The problem has been that in fact, each time there was more going on and it was getting worse.  So my preference is not to get excited about good news so I don't have to feel devastated if  the news is bad.  It is another of my coping mechanisms and it works for me.  Those fears about dying was the first time in 2000 and I hadn't a clue as to what was going to happen. The other time, 2007,  I was filled with fear is when my husband had just  died and I was told my cancer had metastasized and only comfort measures could be done. I felt so helpless and vulnerable. As I stated in my last blog that until I found a way to take control of my life, I was overwhelmed with most things.  I couldn't stop crying.  One of the psychiatrists I worked with thought I should go to a support group.  I told him that a group is where you give each other mutual support.  At the time, I could not do that because I didn't want to hear about anyone's issues.  I was completely focused on "me".  He then said, " perhaps a group is not the best thing for you".

I do think there is a place for groups and I have known a lot of people who have used them and found them very helpful.  For myself, drawing, photography and gardening have been my time to focus on what is important to me, relax and sort out the direction I wanted to go.  Then, I talk with the people I'm most comfortable with to get their ideas and support.

Since the surgery, it has been a time of contact with friends and family.  Some I haven't heard from in a while.  I found it very helpful.  It made me feel connected.  I am getting the feeling that maybe I push people away and then they aren't sure what to say or do.  I'm glad they are hanging in there with me.  I wish I could be more open, but I think I worry about losing control of my life.  I am visiting wonderful friends Marykay and Michael Feit. He also has been dealing with cancer, though in remission now,  he went through the loss of his first wife while he was in treatment. We have connected because of  our parallels in treatment and loss.  Because of this Marykay, Mike and I have very open discussions about death and dying, things said to us that sound very insensitive.  We both felt that the odd and insensitive statements were not meant to be mean to us, but in their own way to offer support. We would not balk at people saying they were sorry for what we were going through. We felt there really wasn't much people could say to make it better whether it was losing someone or losing our own lives. We definitely did not want to hear that someone was in a better place, because we did not want them to go.  We both did not want to hear it was going to be okay, when it obviously was not going to be.   Mike and I also felt it very strange when people would say "Sorry you are going through that, but it won't happen to me because I watch my diet", or something like that.  Our sense is that people may think they are preventing it from happening to themselves because they aren't in the same boat. Mike's first wife said a person said to her, "oh yea, I heard about that happening with another person and they died in three weeks."  Something like this was also said to me.   Marykay's previous husband committed suicide, so all of us have had interactions with people that were helpful and not helpful.  We did feel that those who were willing to listen when we were wanting to talk helped. Touches and hugs from those we were close to helped. Giving us space when we asked for it helped. Letting us get back to a routine of work helped.  If people could imagine what it might be for them if they were in this spot, they probably would be more sensitive about what they say.

 When I got up this morning,  Mike  showed me the newspaper and there was a column by Kate Scannell who is a physician who went through cancer treatment.   This column's title is Guidelines for talking about cancer. Very good. In addition, she recommended a book "The Etiquette of Illness: What to Say When You Can't Find the Words" (2004), by Susan P. Halpern. Before Dr. Scannell found this book, she intended to write the book, but she found this one sufficient in covering the subject.

 I was surprised how fast I felt well after this surgery.  I take Oxycodone for back pain that I've had for the last year.  Because it pretty much gets rid of the pain, I forget that it is the pain medication that is helping me feel normal.  When the surgeon said he'd give me Oxycodone after surgery I really balked, because I didn't think it would control the pain.  So he gave me a higher dose and warned me about taking much, in particular, about the possibility of overdosing on Tylenol.   Well, I did take too much the first night (no more than the max dose of pills at one time I was allowed to take).  I was so logy the next day that I didn't take any more pills until bedtime and I took my regular dose of one 5 mg pill then.  I won't be so casual about it next time and I will tell the doctor the next time I see him what I did.

I'll be returning home in a couple of days.  This trip has been very healing as it always is.  I'm taking art classes which are good for the soul.  My art could not even be described as first grade level, but with proper instruction, it is amazing how much I have improved.  See you next Sunday.    Rachel

First Blog, an introduction

Why do I want to do a blog?  Well, I'm going through a lot and I think that writing about it will help me.  But, I also think other people would benefit by it.  I have had cancer for 14 years and I have just started the 4th bout of it coming back.  Not only do I think people who are going through this would be interested, but I think people who care about people who are going through this and don't have a clue as to what to say and what to do might get something out of this.

I was a social worker and most of it was in health care.  One area I worked in got me very close and personal was in Hospice care.  This is care that provides comfort measures, the medications, the equipment and the staff to let families and patients know what was going on and that can allow people to die in the comfort of their own home if they desire.  I loved this work.  The staff and our supervisor were fabulous.  I still keep contact with my supervisor who was an RN.  She is very special to me.

I have to say I was overwhelmed with what was going on and I cried a lot for myself.  On the second bout, my husband died of cancer and I was really torn apart.  Do I cry for him or for me?  I felt incredibly selfish.  My breast cancer was estrogen receptor positive.  It was a stage II when first diagnosed and when my husband died, it was a stage IV, metastasized, stage IV.  Ugh!  I was told they would just keep me comfortable.  I would lie down and think "this is it", but then I wouldn't die.  It had moved to my neck and some in my chest wall.  I got radiation and it worked.  It did start moving another direction and when I told the radiologist, he agreed and I had more radiation.

By the second bout of cancer I was working in a prison.  It was fascinating, to see men who could be so big and yet so out of control.  I mainly worked on the psychiatric unit in the hospital.  There was a psychologist then who said I had to find a way to take control of my life.  It was the loss of control that was the biggest problem.  So I started looking.  I noticed there were some articles about diet and cancer and needing something to focus on, I did that.  It lead me to The China Study which I thought was fantastic.  I feel this country needs to make a change in how it sees food or we are going to go downhill even more.  So I focused on that and I do believe I've been around longer partly because of the changes in my diet.  Actually, I think all people should be doing this, the younger the better.

My third time was in 2011.  There was a tumor above where my left breast had been.  It was a lymph node.  When they ran tests on the tumor they found that it was not only estrogen receptor positive but also HER2 positive, another hormone which would allow me to take Herceptin, a drug found to be particularly effective on this type of cancer.  There was a chance that I was going to lick this thing, but not a chance.  It came back.  I had surgery this week and we will talk about any possible treatment on February 27.

I married late in life, because until Paul came along, there was no one I wanted to marry, so I didn't marry until I was 54.  We had been together for years, and I would have wanted to marry, but he panicked at the thought.  Finally he did ask me to marry him and we married in Thailand on one of our trips.  Paul and I traveled a lot.  We went to many countries in Europe, Russia, Thailand, Macau, Rome, Greece, Kenya, South Africa, Australia, Canada, Mexico and Argentina.  There were many other countries, but you can see, we got around and loved every minute of it, even when things weren't the greatest.  We looked upon everything as an adventure and it was.

Paul came into our relationship with five children who are now grown and have their own children.  I'm received differently by each of them.  I can handle that.  My closest relationship is with my oldest step-daughter.  She has really been there and is a wonderful support.  I also adopted my daughter as a single parent when she was 10 and I was 31.  She had a tough life which ended up being tough for me too.  She is now in Illinois and is carrying on in a way that is okay for her.  My daughter's son lives here and I see him some.  I'm sure he would like to spend more time with me, but I can handle only so much.  He is going to become a father, so that will make me a great grandmother perhaps in April.

Before I went into social work, I majored in music.  I loved it, but dropped out at the end of my junior year because of how I saw I was treated.  I played the bass.  There were many jokes about me playing bass that I finally reached a point I could hardly stand it.  Plus I was told I could become an elementary school teacher and perhaps I would get a chance to use my music there.  That had not been my plan.

So what do I do now?  I retired.  I had multiple things going on and it just became too much.  I started an art class locally and my art teacher is Carol Bradshaw who is a wonderful botanical artist and I can't tell you how fortunate I am to have her as a teacher.  I also signed up for a 5 week class at the Levin Institute because the price was right and there is a wonderful program in town called Art for Healing done at Mercy Hospital.  It doesn't matter if you are a particular religion or no religion.  All activities are to help you relax and focus.  They have different groups in art, singing, writing, acting, etc.  If new ideas come up that can be used, they will do it.  Sister Sherry Dolan is the head of this and she is fabulous.  Another thing I do is go to parks and do my art.  It is a wonderful outdoor setting.   I also fixed my back patio to make it my healing space.  I bought a fountain which looked ridiculous with nothing around it so I put some plastic cypress trees, and dried plants that had aromatic  leaves.  In addition I downloaded sounds of nature that would go on for an hour and put it on a Nano iPod just for what I want on the patio with a small speaker hidden in the trees which makes it all seem real transporting me to the place I want to me.  I have one beautiful chime that sounds great.  I can do my art there, read, have coffee or drink my wine.  I have an outdoor table for eating and I finally got a heater to make the space inviting when it is cold.  I love it.

I move a lot slower than when I was working and I'm glad to be doing that. 

I have a friend Sarah Seifert who is a psychologist and blogs about her family.  She has two young daughters.  One has autism and the other has schizophrenia.  I was watching her blog that made me feel I should do one.  She suggested that the first blog be about my surgery and said "Yes!"  But nothing exciting happened, so everything went smoothly with no issues.  I will tell you though that the previous time I was there with my daughter Shelley, a doctor came in after the IV was started and started to talk about my rectum.  We both looked at him blankly and said "wrong patient". 

My plan is to do this weekly on Sunday nights.   Feel free to ask me questions, I'll try to answer.  I also could get emotional sometime, so don't hold me to being a strong woman.  I do swear, but I'll try to control that.  See you next time.     Rachel