Canary in a platinum mine

I feel numb. I tend to feel like this after receiving bad news. Then it hits me a couple days later. Pow… I’m devastated, I’m angry, I’m alone in a room full of people who love me. I keep thinking, will I ever feel normal? Ian is like my canary. He feels it right away. He is immediately angry, sad and devastated. As I stoically sit in the doctor’s office trying to quiet my inner dialogue so I can hear the important information the doctor is telling us, I can see my future turmoil on my husbands face.

I’m a mess Thursday morning. Thursday I receive the first of two test results. The first result does not effect my current treatment. They will tell me if I have a genetic mutation that would make me vulnerable to breast and ovarian cancer. If I was not metastatic the results would tell me if I should get a mastectomy as a preventative measure. But as a metastatic person I would have to put potential life saving chemo aside for a surgery to prevent cancer that might not happen in my life time. It’s like jumping in a shark tank to escape a hungry tiger 100 miles away, who may or may not head in your direction before you leave the area. I’ve prepared myself for bad news. I’ve been working on how I’m going to tell my family members that this is genetic and they need to get tested.

The phone rings. I brace myself to receive the bad news without the comfort of looking into the eyes of the messenger. The whole process is stressing me out. I keep thinking I should have pushed to receive the news at the hospital. The genetic counselling secretary had been very reluctant to give me an actual face to face meeting. I’m shaking as I answer the phone and put it on speaker. My husband is sitting across from me. We haven’t discussed how we feel but I can tell from his face he is expecting good news. He is right. The news is good.

The impatient woman on the other side of the phone confirms that I am negative for the three genetic mutations they have tested me for. She rattles off a disclaimer of how this doesn’t necessarily mean I’m safe. It’s only based on what they know now. In the next couple of years they might find other genetic mutations and I should periodically check back with her. She finishes off by telling us that if we find out about any new cancers in my family we should let her know. She is audibly irritated when I tell her that I have recently discovered that three of my great aunts had ovarian cancer. She coldly tells me that it shouldn’t matter as I tested negative for BRCA2. She mumbles that she will still have to rerun the numbers to see if I’m eligible for yearly MRI’s on my breasts. I tell her it doesn’t matter, I’m stage 4, I have CT scans every three months. My body is under constant surveillance. She hangs up.

I look at my husband who is relieved. I’m still shaking. He tells me it’s good news. I can feel nothing except fear. I have no idea why I feel like this. I think maybe its because I have prepared myself for bad news on the test that doesn’t count and good news on the test that does. My irrational thoughts keep asking,”Does this mean the chemo hasn’t worked”. The two tests are completely unrelated. Deep down I have this fear that I’m only allowed a certain quotient of good news a week. Selfishly I don’t want it to be used up on genetics. My daughter pulls herself to a standing position against my leg. She reaches for me wanting to be picked up. I turn and take her in my arms only to feel a sharp pain in my shoulder. My muscles are so tight with stress I’ve pulled one. I can hardly move. My husband takes her from me and I spend the rest of the day stuck in bed watching horrible daytime television.

The next morning I awake to find I’m still in pain. My husband helps to get me dressed and prepared for the doctors appointment we have in the morning. I’m in a fog as we fight through the morning ritual that will end with my son in daycare and my husband and I sitting in the hospital waiting room, hoping that the last 12 weeks of chemo have worked.

I go numb. The doctor has just walked into the room and announced that unfortunately he doesn’t have good news. Not only have the lesions in my lungs grown but there are now five new spots on my liver. “I guess this really means that I have metastatic cancer” I quietly say. “I’ve been hoping that I had swallowed jelly beans that had somehow found their way intact into my lungs” I confess to the doctor who smiles back at me kindly and gently replies “it’s cancer”.

You see, I have been secretly hoping this whole thing was a mistake. It hadn’t occurred to me that the chemo might not work at all and the cancer would not only grow but spread. I had spent time in therapy talking away my irrational fears that the chemo wasn’t working because I hadn’t lost my hair and my side effects were minor. I had been told by numerous people that I was going to have good news today. Everyone had sent positive vibes. I look at Ian to see how I should be feeling. He looks calm and assertive with a deep sadness penetrating from behind his eyes.

Ian asks what the next step is. The doctor patiently says, “I would like to try a platinum based drug that is a bit left field. It’s not usually used for treatment of breast cancer but it works well for other types of cancer. The side effects are worse but we need to stop this forward momentum.” I look at him and nod. Ian and the doctor discuss the rationale for this treatment over others, the next steps if this doesn’t work and the unlikelihood this wont work. Ian seems to look reassured. I feel numb. My back hurts. Is this really happening? I’ve just started to adjust to my life with taxol. I have started to feel like I have things under control. I’ve even felt like I’ve rediscover that spark that I lost when I was diagnosed that makes me feel alive. How could this be?

In the car ride home I ask my canary how he feels. He says he’s really angry. I have a feeling I will be angry very soon. I tell him I love him and I’m sorry.

6 replies »

  1. It seems impossible that we humans have to go thru this kind of agony, again and again. I am a 5 year veteran of cancer;it is a rollercoater ride and any “new normalcy” that I am able to attain, changes with the next step. Please have hope;get power from your daughter & your loved ones. Attitude is everything. I had 8 rounds of chemo a few years back-hated it & I’d hoped I would never have it again. God laughs when we make plans-I am on chemo again.I was petrified at the thought-then I realized-what am I more afraid of-being on chemo or not being on it. What am I ready to do, as long as it might add time to my life. The answer is easy-almost anything. And guess what-this chemo is not as bad as I’d feared,so far. Or maybe I am wearing my wonder woman costume more often. Best of luck,Marcia

  2. Anna, I can’t tell you how disappointed I am that your news wasn’t good. I am also sad that we are not closer….closer as a family and closer geographically. I wish our family was better at getting together and sharing holiday celebrations or having family get togethers so that I might know you better, know your children and Ian as well. It saddens me that someone who shares some DNA with me doesn’t know me or my children either… This realization has prompted me to reach out to our other cousins and the cousins on the other side of my family….at least through e-mail and facebook…so I can at least get a snapshot of their lives and feel a bit more connected. I’m very sad that you have to endure this horrible sickness and I am thinking of you daily, looking for blog updates and even donating time and raising funds for cancer research….I understand that’s little comfort when you are fighting such a monster. Keep fighting Anna, draw your strength from the love around you. Much love – Kim

  3. My dearest Anna, I am sorry to hear about your latest bump in this journey of life.
    I want to share this quote with you, “To travel hopefully is a better thing than to arrive, and true success is to labour.” Robert Louis Stevenson
    The universe presents us all with twists and turns in the road. I truly believe that how we navigate the path is life in itself. I am honoured to know you and Ian. The love and caring committment that you have for each other is radiant. Your children are privileged to have such wonderful parents.
    I have been told by people in my professional life that I care too much about the journey and not enough about the destination. I wouldn’t have it any other way.
    May your journey continue with the light of the world upon you. Warmest wishes
    Susan

  4. Oh Anna, I too am sorry to hear about the bad news. Keep on being the trooper you are in mind and soul. We are all pulling for you! Your post has made me cry as this all seems so unjust. But there is still hope and I will continue to pray for you and Ian in your journey.
    Yours,
    Nolan

  5. I hit like because I enjoy your posts, but I don’t at all like this post (I.e., that the cancer continues to spread). Hopefully the new drugs will work and one day you can look back on this as the positive turning point in your treatment. Best wishes!

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