Rules

I am going to tell you about two rules I have recently found out about when it comes to breast cancer support groups. This first one makes sense; I get it, but the second one…not so much. In fact, it really pissed me off.

When a member of the SOS group calls you, your caller ID will display “private”. At first, I didn’t think much of it as many people do have private numbers, it was only later that I figured out why it displayed “private”. But I will get to that. Anyway, Wednesday night a woman from SOS calls me, on my request. A woman that also chose a double mastectomy over a more conservative approach and also went thru chemo. I of course, cannot tell you her name but I can tell you this: there are some amazing similarities between the names of the female members of her family and the female members of mine. I think that this, like the fact that Francine and I share a birthday, is a sign of goodness. I no longer believe in coincidences. But I’m getting off track…

This woman was wonderful to talk to. She told me the good, the bad and the ugly without sugar coating it. Without any of that saccharine sweetness people often put into the tone of their voice when they are talking to a person with cancer. She said “yes, this sucks” followed by “you will get thru it”. The most important thing she said to me she said thru an email I received from her yesterday..and I quote:

“Stay your course of proactively seeking information. You are a strong woman with a great sense of humor. What you are showing your daughter is how to navigate the hard core crap that life will throw us with dignity, style, and grace. She will watch her mother take the bull by the horns, even when it is not pretty, and move forward with living. This is a gift that her friends and classmates may never receive form their mothers.  You can, and you will do this for your daughter. Most importantly, you will do this for yourself.”

I truly appreciate this woman. Thank you.

She also told me that her hair started to fall out about 10 days after her first chemo treatment. Dam. (and why did I tell Martino yesterday that I had heard it would fall out in “a couple of days after the first treatment”? Since when is 10 days “a couple”? I knew better, and I said it anyway. I can’t figure that out)

This woman I spoke to has children, but they and were much older then Michelle is when she was going thru treatments. So she said she would have someone else call me, someone who had young children during the time she was diagnosed with, and treated for, cancer.

So SOS #2 calls…and her number displays “Private”, and now I get it. Star 67? Anyway, once again I find myself on the phone with a woman whose female family members have name similarities to the names of the females in my family. So amazing it’s almost creepy. I told her I wanted to meet, to let her talk to Michelle, to let her kids to talk to Michelle. And here is where I find out about this rule: it’s not allowed. It’s private. Ok, I get that. These SOS women don’t need some crazed stalker person chasing them down. It’s really OK, I get that. But that doesn’t help Michelle, so now what? And then Michelle comes downstairs, so I ask this woman, can she talk to Michelle on the phone? She didn’t see why not so I gave Michelle the phone and told her to ask any question she wanted. She wanted to know: how was that woman now? How long until her hair grew back? How old were her kids? How are they? And most importantly, did this woman know that she had just lost her second top tooth? This woman helped Michelle, and I was so thankful for that. Thank you.

Last week I made an appt. with a therapist for next Wed. This therapist deals exclusively with women who have breast cancer and their families. Ultimately, I want her to be Michelle’s therapist, but I (we, Alan too) are meeting with her first. When I spoke with her over the phone I told her one of my main concerns was Michelle. I needed help to help her navigate this journey we are on. She told me about a Kids Support group that meets on Thurs. nights. It’s an 8 week group that had started 3 weeks ago. But she will make some calls and find out if we can join. This group is FOR KIDS who have a family member with cancer. Since Michelle is a KID and her MOMMY HAS CANCER I figured that the therapist making some calls was just a formality. I was wrong. She called me back on Wed. afternoon to report that she checked into it and “they” (not her, this isn’t her group) feel that “it would be in everybody’s best interest to not introduce a new member to the group now that it has already started and bonds have been made.” Ummm…what? That’s one hell of a rule. Wanna know what I think of that? It is NOT in “everybody’s” best interest. Because my family falls into that “everybody” category, and telling us that “no, Michelle can’t join” is not in her best interest. At all. And I can’t imagine being the person in charge and saying “no”. And I suppose there is the slightest possibility that she has a valid reason for saying “no”, there is the slightest possibility that it broke her heart a little to say “no”, but that doesn’t stop my blood from boiling when I think about it. (And hey, I have invasive and aggressive breast cancer; I don’t think it’s good for my blood to boil.) But it is what it is, and I need to roll with it. And I need to find something else for her.

Because what Michelle really wants is to know she is not alone. That there is other kids out there that are going thru this, or have been thru this. She wants to talk to them, to ask them questions. I don’t blame her. We all need that. We all need to talk to someone who is going thru exactly what we are going thru. And it’s easy for Alan and I to find that support. Why is it so hard for Michelle? My Michelle. My baby.