Be Proactive

My mom Debbie passed away in Feb. ‘08 two weeks before her 52nd birthday. Being just last year, I still struggle with grief, anger, guilt, and random thoughts pop up throughout my days about her. My son Chance still asks if he can see nana, and I have to gently remind him that she is in heaven, and sometimes he will tell me that he dreamt about her, that she came to visit him when he was asleep. I am still so struck by the last year of her life, how everything was for us with her living with me that I can’t help but think about life and death. In fact it’s all I have thought about for the last several years, I sometimes fear I brought this cancer on myself because of my inability to escape emotionally from it. Her face in the very last second of her life, the tears that sprang up in the moment the nurse called time of death is imprinted in my brain forever, and the experience of having to decide to give her morphine for comfort- knowing there was no turning back if we did- is like it happened yesterday. It’s kind of funny because she drove me nuts, she literally made me so crazy I had to see a therapist when the cancer travelled to her brain just so I could deal with her. I would happily have killed her myself most days. But I did love her, and I do wish she were here now, her crazy faults and all. She always thought I didn’t listen to her, but I must have because it’s a year later and I can’t get her words or actions out of my head. This post is partly about doctors, and about being proactive with your health. About caring enough about yourself to want to live, and for fighting for your right to it.

My mom was diagnosed with lung cancer Dec. of 2006. I was very pregnant with Sinclaire, Chance was only 1 years old and she was living with my family. Hank, my stepdad died of liver cancer about 5 years ago now, so she was passed around staying with friends and family until she settled with me-the only child- a few months before Chance was born and she never left for long after. For the record, she had COPD for years before her diagnosis. She wasn’t on an oxygen tank, and she never quit smoking. (don’t get me started on this subject) So with COPD, we had several trips to the ER because of breathing issues. Some thought I was insensitive when she was diagnosed but honestly I wasn’t surprised. I remember when she got the news. We were home, the phone rang, it was Dr. K and he told her point blank the test was positive for cancer and she had about 1 year to live. She broke down after hanging up thinking just that … not the cancer part. The other part. It is my belief those words shaped her entire experience and existence for the the next year that she was alive.

One year to live? Was he God? Did he have an ‘in’ with the powers that be that we didn’t, that he could tell her such news over the phone? Anyone ever heard of bedside manner, or even in-person manner? This post isn’t about bashing the doctor who treated her. In fact, he’s very nice and I’m sure adequate at his job. But looking back, we were ill-informed, and we could have done more if we had known we could, and how to go about it. For the most part, her chemo treatments were standard and the right choice. She had lung surgery on Dec. 12th, 2006 and started chemo a few weeks after that. By April or May, the cancer was gone. There were no more signs of cancer in her lung area, and it hadn’t spread anywhere else that the PET/CT scan showed.  The issue, the thing that signed her death certificate, was the lack of follow-up. After explaining in depth at our first meeting in the little room, how lung cancer will most likely travel to other parts of her body after surgery, and she wasn’t a candiate for radiation, one would think that check-ups at least every 6 weeks would be necessary. He gave her a cancer free bill of health, and said come back in 6 months. He is an oncologist, we were just uninformed family… if he said see you in 6 months, well that is good enough right, time to celebrate? No. When she went back in 6 months for a CT scan and blood tests, they were clear as well. No cancer. Excellent news, except something was off with her. And this is where I blame myself. I could see that something wasn’t right, her speech was sometimes slurred, she would forget things, and she would call my kids by other names. I asked again about the tests, they assured us she was fine. Two months later, on Dec. 10th, 2007 she passed out and was taken to the ER where they found a large brain tumor near her ear on the right side of her head. The lung cancer had been spreading to her brain and growing, in fact there were about 4 tumors the largest being operable and the others needing radiation. She was taken to OHSU (different than her previous onco and highly recommended). One year to the day of her lung surgery, she had brain surgery. It was an emergency situation as the pressure from the tumors was expanding her head, and they had to drill a hole just to relieve the pressure or else.. well. The surgery went well and she had a great recovery. Once she healed from that, she was scheduled for radiation with Dr. Fuss at OHSU- an amazing radiologist who not only answered all of our questions from a medical viewpoint, he believes in life and quality of life, called me on the weekends to give me updates and worked through her fears of being in that mask that had to go over her face so they could treat the tumors. Needless to say, she passed away 2 months later on in Feb,08.  (Edit- not because of the brain tumors, because her lungs gave out ) Regardless of everything and how hard it was, I do think it was her time because she didn’t have the will to fight anymore. From the beginning, she had sort of a defeatist attitude mostly I’m sure, because the very first words spoken to her were ‘you have cancer and one year to live.’ We asked Dr. Fuss for a timeline on her life, the last onco had given us one so we thought it best to be prepared. He refused, he said with proper treatment and response, you can’t put a time on someone’s life. If only someone had told us this sooner.

The morning of the appointment where I was to get the results of my biopsy was somber, and I was quiet. I knew the results beforehand, I could feel it, I had felt it for some time. For several months before my trip to the ER I was waking up in the middle of the night with cold sweats terrified that someone was trying to break into my home. I would stay up for hours, scared of some imaginary force that I was positive was real. The doors were locked and barricaded, it would take some serious professionals to get in, but I wasn’t soothed. About a month before, I was looking at my moles, I have one on my left shoulder that has jagged edges and I was trying to figure out if it had changed, then I moved on to my husband who is a redhead and has lots of those bright red moles, I was tuning into my young children trying to ‘hear’ if there was something wrong with them . I was searching for something, one friend told me it was like I was waiting for the ball to drop. Out of all the things I thought was looming, breast cancer – and especially Inflammatory Breast Cancer – was not among them. I still am not convinced it’s really happening. That morning after getting my mocha on the way to the doctor’s office, I could visibly see my mom in my mind, and I could feel her with me and I would swear I heard her say ‘do it better’. I told Ken, my husband and he thought it made alot of sense, that if I were to learn from her mistakes… fighting to live and wanting to live, and beating this cancer would be something big that I could take from her experience. I went all the way to think that maybe the whole point of her living with me during those trying times was to show me first hand how to do it better than she did. In the grand sense of the ‘bigger picture’ and some lessons aren’t learned until years later, this makes sense to me. I am thankful to her for telling me that beforehand, right before that doctor’s appointment, and I’m convinced it was her now because of what happened.

The surgeon came in to give me my results, and the words out of his mouth were ‘you do have advanced invasive breast cancer, several tumors are positive for it (3), and I would be very surprised if it isn’t in your lymph nodes and probably beyond in other organs as this is a very large aggressive mass’. I had already done my research on IBC, and knew I needed an onco who was smart enough to deal with it pronto, so I said ‘get me into an oncologist today’. He said ‘now now, there’s no need to rush… this isn’t something that has happened overnight, they have been there a very long time, we’ll get you into one but it’s not like an emergency situation where you need to be seen today.’ I knew intuitively he was wrong, that he didn’t know anything about IBC. I walked out of that office picturing my baby girl’s face, almost posively crushed at the thought that I might not be alive in a year to see her 3rd birthday. By the time I got home though, I was mad and I contacted an IBC site who put me in contact with someone else who knew that what he had said was malarkey, and in 2 days I had found my own oncologist who knew what IBC was, and how to treat it effectively, and how important it is that I DID get in that same day- not the next week. If I hadn’t done my research, if I hadn’t known to look for other sources… who knows how my outlook would have been hearing those words from his mouth. Turns out, I do have 3 positive tumors, but it hasn’t left my breast. It’s not even in my lymph nodes according to the CT/MRI/PET scan. That’s quite a bit of difference in diagnosis. I’ve been angry about that doctor’s appointment ever since, angry about his lack of knowledge on the subject, angry about telling a patient- any patient- that they have cancer but it’s ‘not an emergency situation’. I’ve been angry that my mom got a death sentence along with her diagnosis because I knew she wasn’t strong enough to emotionally combat what any doctor says. But I know now, that it’s not what we’re told by doctors, or anyone for that matter it’s how we respond, the actions we take in response to the info given. Even with what had happened, I was nervous and scared about seeking a second opinion, I felt they would be angry with me somehow. Never be afraid to get a second, third or fourth opinion. This is your health, my health, and the most important thing is being pro-active with our healthcare, not giving up, and not buying into a death sentence just because a doctor says so. If my mom had had an MRI instead of just a CT scan- that can’t read brain mass- we would have discovered those tumors well before they got to the point that they did. We didn’t know it was our responsibility to ask for that test. I guess my advice is don’t be afraid know the facts, know all of the options available to you, know all of the scenarios, seek out other people who have had the same experiences and are survivors, if someone says ‘my friend died of that’ find out why instead of being scared- it’s possible they caught it too late, or the physician didn’t know how to treat it, their diagnosis does not mean the same for you. My mom’s face on her deathbed is forever with me, day in and day out, and it takes alot to say ‘her situation is not the same as mine’. But I have to, for her, for my kids, my family and hopefully for other women out there who are facing this same scary monster or will in the future.

crossposted to http://lynkelley.wordpress.com

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6 Responses to Be Proactive

  1. Dianne Duffy says:

    Lyn,

    You are so right! I wonder how many have gone before their time, just because the doctors knew little more than the patients! I feel like just kicking myself for not being more proactive in my own care, but again, I trusted that the doctors “knew” what they were talking about. It has been my experience that I “knew” what was going on long before any doctors had any clue. I “knew” I had cancer even though I had just had a clear mammogram the previous month, I “knew” I had the genetic mutation, even though the doctor had said only a small fraction of women had it and my family history wasn’t strong enough because I didn’t have any sisters or aunts with breast cancer (DUH – I don’t have ANY sisters or aunts at all!). I “knew” I should have a double mastectomy, even though the surgeon thought it was irrational, I “knew” the anti nausea drugs were making me sicker than the chemo, I “knew” there was something wrong when the pain increased after my surgery instead of decreasing – the doctors just thought I was nuts or had a low pain tolerance. And my husband “knew” I was having a psychotic reaction to the hormone therapy drug, while the doctors were content to shuffle me from one mental institution to another.

    I was not nuts!~ What’s nuts is to treat human beings in this way! I’m writing a book and calling it “MY Misadventures with (my health plan). I plan on sending it to the president of the company and asking if he would want his wife/mother/daughter treated this way.

    I feel the need to do something about this. To not just complain but actually somehow cause the “system” to change the way people are treated. I just haven’t found out how to do that yet. Any ideas??

  2. Lyn,

    This is such a moving and pertinent post. We know our bodies and we must press the doctors and “experts” when we do not agree with them. Afterall they are all human too and can make mistakes.

  3. Well said, Lynn. I am so sorry you had to go through that with your mom and you are so strong to be able to “learn from your mistakes.” It’s crucial to question our doctors — even though it can be very difficult to do.

  4. Lyn says:

    Thanks guys, I was nervous about posting that story but I thought it fit considering how many people are still going undiagnosed each day, and I have had experience with it twice now in both my mom and myself… i also would like something to change.

  5. Great post.. this is really a great information..This will be useful post.. I will comeback for more..

    Cheers

  6. whymommy says:

    Wow, wow, wow. Lyn, I cannot tell you how happy I am that you are in our group now and telling your stories to us as well. This is amazing, and I am SO GLAD that you trusted your gut and got in to see an IBC-aware oncologist immediately.

    Wow.

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