Lisa Bonchek Adams

It’s Friday! I want to put a post up today because I know it’s been a while and people worry when I am not making posts. All is fine, it’s been a very busy week with a lot of routine medical appointments. Side effects from the new chemo are starting in and phrases like “mouth sores”, “high cholesterol,” and “follicular head pustules” make me certain that the person who called it “crazy, sexy cancer” was delusional about what cancer really is. There’s a lot that’s crazy but I don’t personally find a lot of sexy in it.

I’m getting help from my team in dealing with all of the side effects and have more appointments with more specialists in the next few weeks. For now things are stable and the next two weeks will proceed as planned. I’m still on Aromasin (25 mg/day) and Afinitor (7.5 mg/day). It’s the Afinitor that’s kicking in with my various problems. My tumor markers have shown a response to this combo over the last 6 weeks so we continue with it for now. I also received my monthly injection of Xgeva to strengthen my bones.

I wish you all a good Memorial Day weekend, especially our military personnel and their families.

The photo above is from 2002 by the way… where have eleven years gone?

I also want to mention that my last post, “There’s No Room for That in This (Six Minutes)” is the foundation for what is now a song titled “Six Minutes.” Over the past few weeks musician Doug Allen and I have been working hard on it and we’re almost done. I wrote the lyrics and he found the perfect music to bring those words to life. We are both so proud of the song and will be sharing in the future. His latest CD is available now and I just love it; it has two songs that have been on movie soundtracks… who knows where “Six Minutes” might land! More to come on this project.

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I get a lot of emails and comments with questions about cancer and how to help those who have it. Let me say clearly that I never think I speak for everyone with cancer. I do believe that asking questions is good, and even if you don’t think my answer is right for you, at least you might look at the issue a different way and clarify your own thoughts.

If people like this format I may continue to post letters/responses more often. I have often thought we need a grief/loss/illness etiquette column and I’ll gladly do my best to help.

This week I received the following excellent question.

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Hello…

I’m a 31 yr old only child whose mother was just diagnosed with squamous cell carcinoma a week ago.

I’m going home for the first time (parents in WI, I’m in IL) since the diagnosis and after reading this blog, I’m not sure what I should say to her. She is a pessimist by nature and already saying she would refuse chemo (the details of her condition and treatment plan are still in the works) so my dad and I need to figure out a way to keep her positive so she can indeed have the support she needs to fight it. I bought some colored paper and was going to list “reasons why you are a fighter” as well as post some motivational sayings/quotes on their bathroom mirrors, but the ones that came to mind now seem like the ones you SHOULDN’T say “you can do this,”,”stay strong,”

Do you have any suggestions on what I could write? Please keep us in your prayers, I am obviously terrified of the road to come.

—– J

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My response:

A few quick thoughts for you, J. I am so sorry about your mom’s diagnosis.

My first thought is that you all need time to adjust to the news. The way you react initially is not always the way you feel once you get your feet back under you. She needs a bit of time to not only adjust to the news but also to make this treatment plan. She doesn’t even know yet what she will be potentially recommended for treatment and yet you are expressing desires to coach her on how to feel.

Being supportive does not necessarily mean keeping her spirits “up.” Maybe what she needs right now is support for how she actually feels, not pressure to be acting a certain way. The best way to support her is to listen to her, and not try to tell her how she should feel. Let her adjust. And most importantly, respect whatever she chooses.

We love our families more than anything, but it’s her choice to make how she wants to live her life and how she wants to treat her cancer. It’s enough to deal with these diagnoses without feeling you are carrying the emotional burden of your loved ones on your back too. It will mean that she will know everyone rises and falls on her actions. That’s a huge weight above and beyond the physical and emotional toll she will be going through.

One of the most important things to do is to ask her how she thinks you could help her the most. I have a feeling putting up signs is not it, especially if you say she is a pessimist by nature. Signs around the house won’t change her attitude if a lifetime of experiences haven’t. Loving her, spending time with her, helping her with things that she might have trouble doing… those might be better. The key is to ask, really listen, and then respect what she says. Her needs might change (doesn’t want or need help now but needs it in the future) so you have to ask again during treatment.

If she decides to refuse chemo it will be tough, but it’s her choice. Chemo is very hard and is a quality of life issue too. Depending on what they are recommending and what the ultimate details of prognosis are, it’s important to respect what she opts to do while still encouraging her to see the benefits (as described by her doctor).

Those of us with cancer know everyone wants us to be “strong” and “positive” but it’s what we need to hear the least. It’s not like we haven’t thought of that already; it often just makes us feel like people are telling us how we should act because it makes it better for them if we act that way.

Negative emotions are normal with cancer, especially only one week after diagnosis… how could they not be? Not feeling free to express them may just be one more way she feels burdened by this disease right now.

Clearly you love her and want to help. The fact you are concerned with the best way to support her shows wonderful affection. The best way to do that right now, so soon after diagnosis, is to ask, and then respect what she says… That’s my best advice right now.

She will need time, but ultimately I think that she will be grateful for being allowed to express her emotions both negative and positive. I wish you all the best. Please keep us posted.

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If you knew me, you would know I am resilient. Tough, even in the face of the worst news. You would know I rise to the occasion every time. I might break down before, I might break down after– certainly after. But I will meet the challenges at each and every turn.

If you knew me you would know I smiled my way through many of my hard times, lied and smiled and said “fine” when many a person asked, “How are you?”

If you knew me you would know I am not a negative person, that I am not a pity-seeker, nor a martyr. You would know that I just do the best I can, and want to be dignified and strong, but am not in denial.

If you knew me you would know I love to do things for others, moreso than myself. You would know that in this turbulent portion of my life I have done what I can to show others what they mean to me, and how much I appreciate the kindness of strangers… how the smallest encounters can stay with me forever.

If you knew me you would know that I tried my best to make others feel at ease with my cancer. I always took pride in looking the best I could with what I had left. I created outfits around my scarves, and learned how to draw in eyebrows so that it wouldn’t be too obvious I had none. I tried to set a good example for my children, being honest with them about what was happening, loving them as much as I could, and asking the others who loved them to help them feel special and safe.

If you knew me you would know I care for others. When fellow cancer patients have asked to see what reconstruction looks like, I place my pride and embarrassment aside to honor their needs, their fears, their emotions. While some might (and do) hide their illnesses, I cannot. I have chosen for myself, and for my children, to be open about what cancer is, what it does, what price it demands. I believe that being this way will reduce the shame, the fear, and the confusion for them. Nothing has been more important to me than making sure my children understand what is happening and what the scientific reasons are. That honesty does not come at the expense of hope. Of optimism. Of sheer will. To remain mum about these feelings, these thoughts, these explanations of my experience, is to deny my life for the past four years. To do so says the suffering, confusion, and fear were ill-placed. To avoid talking about the reality of the dangers, the problems, the down-times is to not only be in denial but also to assert that my fears are irrational.

If you knew me you would know that I write not because I wallow in darkness, or think negative thoughts all the time. If you knew me you would know I write so that the emotions can be explored, pushed, pulled, twisted, and shared in order for me to be positive, optimistic, and strong for the rest of the world to see. It is the sharing of these ideas on paper, and sometimes reaching the hoped-for connection to people who read them (whether because they resonate with you, move you, educate you, or make you thankful that you have no idea what the cancer experience is) that keeps my words flowing.

If you knew me you would know I’m just a person, doing the best I can with what I’ve got.

Maybe it’s a bum rap, but it’s my bum rap.

It’s my chance to show what I can do:

Just watch me.

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