Pain, pain go away come again another day

I am in so much pain. It has been weeks maybe months that my back, hips and leg are feeling like they have turned againest me. I am taking so much of morphine and percocet that I am fearful of what damage that is doing to my liver......I am not sure if this cancer or lupus related but I just know I hurt so bad that there are no words that can describe it. Today I hurt so bad that I can't stop crying wishing for relief and frustrated that I feel so awful. I wish I had someone to hold me and just lie and say I will be ok......but alas I don't have that luxury. I am trying not to give into the depression but feel overwhelmned today. Going to the bathroom has become a marathon with each step I take.

The meds make me feel tired but then I get stiff from not moving. I want to go to the gym because the steriods are causing me to gain wieght but I hurt so bad. I am still recovering from the outing of the 4th of July. I hurt so bad that it compares to being hit by a car.....I wish I had someone to hold me and lie and say it will be okay....don't have that luxury....I guess I never had.

Things change

Things change so quickly in life. One moment you are arranging playdates the next you attend your daughters' wedding. Tomorrow is Marissa's birthday. It will be the first time since she was born that I will not see her on her birthday. She is married and will be spending it with her husband. I am very happy that she found her soulmate, but the hard part of not being as involved in her life makes me sad. I will see her for a few hours on Sunday....I am a visitor in her life now. I have tried to be the good parent and let go.....but I will still miss the old times and celebrating with her on her day. She and her sister were the best things to have happened in my life. I wish for her to have a great life as wife......I just miss the little girl who would wait for her birthday surprise and the smile that would happen when she openned her presents. Things change.....I am not used to change but trying.

Pride

Being in the cancer club you have to get used losing things. I used to be able to read labels on boxes, now even with my glasses my vision has become so bad that I have to guess what it says or wait for Jen to come home ask her to read it to me. I have to ask people to help me get to appointments. This morning I woke up in so much pain. The pain was so strong that laying down, or sitting hurt so bad. My body felt stiff and like it had been beat up with a brick. I took more pain meds....something that has been getting more and more frequent. I sat and cried for I could not call my daughter to take me to the hospital because she can not miss work. I could not drive myself because of the pain and the medication I was on.....so I just cried and prayed that the pain would pass. I thought who can I call?? I felt I could not call any friends because they do so much for me as it is....I feel I walk alone in the journey and I wish I had someone in my life that I could just roll over and say help me......but I don't have that luxury. My pride stops me from asking for help, so I suffer in silence. My pillows know that I am suffering but no one else does. We spent the fourth of July in Disneyland. The trip had been planned long ago because Jenny wanted to celebrate her birthday there. I did not say I was too sick and exhausted to go. I just arranged for an electric wheel chair. This was the first time traveling with Marissa and her New husband, Jenny and me. He is really fit and does not understand illness or pain. The crowds at the park were very large and it was hard to manuver the chair. People would step in front of me and thier is no break. We could not get close to the castle to see the fireworks because of the chair. I felt like I had let everyone down by the look on their faces. My self esteem dropped each time a look or a remark was made. I was even asked to walk at times because the chair was a problem. It didn't seem to matter that I hurt and was so tired. My pride did not let me speak up and say no. I didn't want to spoil their time. So I sucked it up and cried later alone in the room. One the last night I stayed in the hotel so they could enjoy the park without the hinderance of the chair. They raved about all they did and how much fun they had. It only proved to me that I was indeed a burden to them. I am so tired.....does life ever get any easier?

Chemo Day

Today was a chemo day. It was different than other chemo days. Normally Marissa takes me to chemo, she has been my chemo buddy since the beginning.

Her new job does not allow her time off like her old job did to take me to chemo so I had to call a friend to take me. I have been in a lupus flare the last week and just not feeling great so I was worried going in. I was called back by the nurse and my vital were taken. My blood pressure was 150 over 101, really high. She took it three times and left the room. Last time my BP was this high was when I was sent home without treatment. The danger of a heartattack happening with the chemo drugs is very high. As I am waiting the chemo social worker comes in. My first reaction is fright.....what if this is the day that we have the talk about hospice is the thought that runs through my mind. But I dodged a bullet and she tells me about precription program that might help Jenny get her drugs. She reads my blogs and saw the post where I talked about the high cost and Jenny not having health insurance. I am happy and relieved with this conversation and glad that it is not one about my own treatment.

My oncologist comes in.....we talk about my BP and he raises the dose I am to be on and says lets try to have treatment today.....my mind is at ease.

My friend feels uncomfortable being in the treatment area and decides to wait in the regular waiting room.....today I am so anxious the Benedryl bag does not put me out. The room is really full today. A woman who has lost her hair and being treated for lung cancer is seated across from me. She is engaged in a conversation with another cancer patient seated next to me and they are talking about wigs...I join in on the conversation and tell them my experience with wigs was that they were too hot. Both women are newly diagnosed so I feel like I am the senior of the cancer club. They are both worried and one starts to cry about the what ifs....and the why me's of having cancer. I tell her, that my original experation date was 6 months to 3 years and I have long passed that. That she could be hit by a bus tomorrow so to stop worrying about what might happen and the loss of her hair and just enjoy the moment. I can not believe I am telling her that cancer was a gift to me...it made me appreciate my family, my daughters and the small things in life. It was as if God had stopped me in my path to realize that I needed to pay attention to the small stuff that existed all around me....to cherish life even when it was hard. I told her how lucky both of then were to have their husbands there with them, caring for them. I did not have that luxury. I said you can take time to be upset for a moment but please don't let cancer run your life....Having treatment was fighting and you have to adopt a fighters attidude to beat your cancer. The ladies began to relax and we started talking about foods and other silly things. My treatment ended and I bid them goodbye.....they were most likely not going to be here next time I was because thier treatment was for only a short time....mine will continue for as long as my body can take it. I could not believe I was actually saying cancer was a gift....but funny thing is I really believe that it was. It gave me courage to leave an abusive relationship. It gave me courage to parasail and snorkel. It gave me a voice. So yes, it is not fun being a member of this cancer club but it did have benefits.