A pain in the neck

spine.jpg

Over the weekend I started to have more and more muscle soreness. By Sunday morning I could not turn my head without there being a great deal of pain. I was literally holding my head and trying not to move. In hospital terms my pain was a 10. I was overwhelmed by it. And the pain meds were not helping. I called Tamara ( she’s a nurse) and she said go to the hospital. She took me to HUP. They took me back right away. And they gave me meds pretty quickly. They also gave me a ct scan not long after I got there.

After some pain medicine through my port and my pain dropped to a zero. It was my first pain free moment in weeks. So we just waited for the scan results. Tamara and I talked about parenting. We talked about our teenagers. We laughed. But my light hearted pain free moment was short lived.

The ER doctor came in and told me that the scan found lesions on my t1 and t2 vertebrae. These were new. And likely the cause of my pain. There are 2cm. holes in the vertebrae at the base of my neck. No wonder the massage and heating pads did not work. So my cancer is spreading. This is considered a recurrence. I hoped that there would be a nice long time after treatment in which I would have a “break” but no such luck. So since my last chemo on September 12th and my last scan on the 10th of October my cancer has spread.

I left the hospital with prescriptions and an impending sense of doom. This is bad I kept saying. I am going to die. I really wanted to be here longer. Tamara rode the waves of grief with me. Then they turned to morbid jokes. “You can have my clothes.” “Oh good you are a stylish dresser”, she said. “At my funeral I want you to read a letter from me”, I told her. “It’s going to start…I told you I was going to die.” This is funny to me. I take deep breaths all the way home.

I told Kelly and the kids in a matter of fact way my cancer is spreading. I keep thinking please don’t go the brain. Please stay away from spinal fluid. Please let me live a little longer. I called my friend Alaina. She has IBC too and she helps me with the medical ins and outs of cancer. I read my ct scan report to her and she gives me her advice. I listen intently and I feel better…more hopeful. Alaina went through the same thing. She was diagnosed with metastatic disease 4 years ago. I trust her opinion.

This morning I went to see Dr. DeMichele with Cindy. I was also supposed to go to radiation later in the day. I waited for a while and then made my way back to see my oncologist. First we talk about my pain. Where it is what it’s been like. Then we talk about my situation. I asked her to put me on Zometa and Navelbine ( Alaina’s suggestion) and she agreed. At first we weren’t sure whether I should continue getting radiation. After calling Dr. Solin they decided no more radiation for me. I will start chemo at HUP on Thursday. I will get it once a week for and indefinite period of time.

So I am going to change everything. No more rides to radiation. I want Kelly to go with me to chemo so I will just get a Philly car share and see what happens. I am on a lot of medication for the pain in my bones. I am back to one day at a time. I feel shaken by this but well…it was always a possibility. People with stage 4 die of cancer. I just want to live with it as long as possible.

9 Responses to “A pain in the neck”

  1. andrea- I’m remembering, not with a great deal of clarity, but seeing you and tony on my front porch and coming to your apartment when we figured out you were having twins.i remember what a gutsy young woman i thought you were. i’m remembering the essence of who you are,funny reverent/irreverent, sparkling…it hurts my heart to read your words now, and yet…this…is also such a part of our lives, not something we ever bargain for or expect, this kind of illness in one so vibrant & full of life. my prayers are with you, kelly and all of your children, who I know from reading about them, are quite wonderful people, not really much else to say, but will keep up a stream of prayers for all of you. in His love, karen

  2. Dina says:

    We prayed for you tonight at Owen’s bedtime, and will continue to do so. Part of me wants to cry and the other wants to punch something. It’s time for you to get a break here. Anytime now…

  3. Barb says:

    I don’t know what to say and I don’t want to say the wrong thing. So please tell me, since this blog is a wonderful tool for educating people about what the process of battling cancer is really about, what is the right thing to say. I don’t want to be the type of person that doesn’t say anything or hides because I don’t know what to say.

    But I’ll give it a try – – I want so much for you to get good news about every test and every procedure. I want so much for each procedure to be effortless and easy for you. This latest news just seems to be incredibly unfair and my heart aches for you and your family. I am so glad that you have Alaina as a friend and that she has helped you so much and made you feel hopeful. Don’t give up hope – none of us have.

    Barb

  4. Rachel says:

    Hi Andrea, this is Rachel (Heather and Bryan’s friend). I just found out today that the chemo stopped working, the liver is getting bigger, and we switched to Navelbine and Zometa. I go to HUP on Tuesdays though, not Thursdays. The Navelbine goes in really quickly – just an IV push for a few minutes. It doesn’t make your hair fall out, either. I pray for you and for me that it does the job it’s meant to do. I’m so sorry that you have to go through this, that any body has to go through this. I get swept away by the unfairness of it all. I know you are enjoying each moment with your wonderful family, and that’s the most important thing to do. You’re doing everything right in a situation that is totally wrong.
    With love,
    Rachel

  5. kristine says:

    Andrea, After talking to you today I came right home and opened your blog to read about everything you had just told me. I have to tell you that even with this very unfair circumstances you find a way to laugh. Do you remember the first time we meet and you and I were making cancer jokes after about one minute. I knew we would be friends. Remember anything you need I am just a phone call away. Sending you big love, Kristine

  6. Toni Bourgeois says:

    Andrea, I remember it like it was yesterday…. you working at Moms, me being a young dumb kid. You always gave me the best boy advice. I thought the world of you, still do. I saw you on and off through the years, we’d stop and chit chat about our lives. You are always doing so much. I often thought how the hell does she do it?! School, kids, work, a new marriage! You have always been encouraging and matter of fact amazing. It is very recent that i have learned about what your going through. I’m at the very least in shock. I wanted to email you privately but not sure how so this is my way to get ahold of you. Right now tears stream down my face as I think of the reality of this and what an amazing, strong, beautiful woman you are. I continue to look up to you as I always have. Xo, Toni

  7. Andrea says:

    Barb asked what is the right thing to say. Well I am a novice too. I know that people who say ‘wow that sucks” annoy me. Saying that is what you say when someone tells you they got a speeding ticket, not cancer. I think everything else is pretty helpful and encouraging. I like when people say they are praying for me or that they are sorry this happened to me. I don’t like when people tell me I am to blame for my cancer and that if I had eaten more vegetables or miso soup I would not have gotten cancer. And I think most importantly you do not have to have cancer to understand that it is painful or difficult. As my friends you are empathetic whether or not you experience it for yourself. I choose to share this experience in depth so that everyone might have insight if someone else they love is ever stricken with cancer. So that their journey will be familiar. I share what I do to explore the challenges of navigating the medical system. I appreciate nearly all comments left on the blog. Some I choose not to publish because they are either too personal or off topic. That’s my call. In any case I am thankful for the words of love and encouragement I receive in this blog.

  8. Dina says:

    There are so many people who say, “You won’t understand until you have kids/a heart attack/a mortgage/a tooth pulled/a hemmorhoid/cancer”…it is refreshing to hear that Andrea feels that people can “get it” without having to be diagnosed themselves. It is hard to be on the end that doesn’t know what to say or how to say it. For some it’s easier to hide than to say something and risk it being the wrong thing. But I would imagine it’s ten times worse to be a person suffering and feel that the world around you just goes on as if nothing has happened. I read, research, pray, hope, and tell all of my friends to do the same because I so much want for Andrea to get well. I know that I am not alone in that. I am glad that you don’t feel alone either, Andrea. I am sending you love, hope, and strength today…no pity on the menu. :0)

  9. Jeff Sensenig says:

    Just wanted to say hello and let you know that my clan in s.philly is praying for you. Most of my news these days have been secondhand from Rachel. Zach totally digs hanging out with your boys. Each time I see my star in the mirror I say a prayer for you and your family.