So far things have been going good with the kids. A few weepy eyes around surgery time watching mom struggling and for Brock and Alex seeing me in the hospital the night of the surgery with oxygen tubes up my nose and not able to lift a glass of water was a bit tough and upsetting for them. Only their close friends know that I had breast cancer and some don't know that I will be starting chemo and radiation...but that won't be a secret for long.
Frank and I sat all 4 kids down the other night and explained what chemo is and how it will affect me. They all seemed to "get it" but we thought that also with Alex when I explained the mastectomy to her and twice she asked "did you have that surgery done yet" making it quite clear, she didn't get it. Our greatest fear with the kids as I become bald is the perception of, if your having chemo your going to die. Kids will say the meanest things at times, not that they mean it, just that they are not thinking. Grant had an incident just the other day where one of the girls came up to him and threw her arms around him and said "I'm so sorry that your mom has cancer. I feel so bad for you." He apparently responded, "my mom had cancer and they removed it and now she is fine. She has to do some other stuff to keep her safe but she's fine so don't worry". How do I know all this? He told me on one of our many drives to swim practice. I asked him are you upset by this? He had said no it just was weird. Well honey, get used to it.
It's not going to be a secret for much longer that I had cancer since I will lose my hair and the whole world will know. When we explained chemo to the kids we went into detail what people used to think about chemo, that people thought you were going to die. We also explained that just a few years ago, the side effects from chemo were debilitating for people but there is medicine now to help people work thru it so the side effects are not as bad. We also told them you will see a difference in me. I will be very tired and I may have some side effects on top of losing my hair that they will see happen to me but remember I'm fine and I'll get better. What we are afraid of hearing from kids is, "is your mom dieing?". Anyone hearing that no matter how much we have prepped them, can't help but have that statement hit a nerve.
We also told them it will be crucial to keep our house clean and sterile. When they get home from school first thing they do is wash their hands with warm water and soap. No friends are allowed over if their sick and when friends do come visit, first thing, wash hands. We have told the kids if one of them gets sick, they have to wear a mask near me, especially the days after my chemo. I am no longer picking up the dog poop, changing liter boxes, picking up dead mice-gifts from the cats, or digging out in the yard all because the risk of some type of bacteria could harm me. They have to step up on doing their chores since I won't be covering for them any more. I have also told them, I can't stay out at swim meets or waterpolo tournaments since I can't risk the sun exposure. I don't want to be in public places or go to potlucks because the risk of germs is too great for me to become sick.
I asked them their feelings about me wearing a wig or scarves. They all agreed that they prefer to see me in a scarf or hat rather then a wig. I have started the process of cutting my hair and making it shorter little by little. I think this way it is less traumatic for them once I am down to a military buzz and finally bald.
I have tried to be as open with them as I can and explaining procedures but trying to explain to Grant a 16 year old boy about breast expander's can be a tricky topic but since he is stuck in the car with me, he can't escape. I want the kids to understand what is going on in case someone asks questions and they can answer without being hesitant. The more informed about what is happening I think the better. I have answers now unlike a few months ago when I was waiting for results from tests. The not knowing was awful for me and stressful. Frank did say he was amazed at how calm I have been through all of this. Usually when I'm stressed I get snappy but no signs of it. Maybe I'm just emotionally tired?
The big test will be when we are in a public place and people stare. I know people will because I was guilty of doing this. I would see a woman who obviously was going thru chemo and think, "oh my God she has cancer. She's so young. Her poor kids" Now people will think that of me. I sometimes think I should wear a tee shirt that says every piece of info on it about me but I guess that would really make people stare, especially those that are close to my age and can't see very well.
So going forward I think they will fine. They are reassured I will be fine and return back to mom status once this is all done. One benefit of all this is now my kids come to me and say "good night, I love you" instead of me searching them down and saying it. I even get text's from Grant late at night saying good night and I love you....so a positive in a negative revisits me again.
So I think we are good, for now.
Keep me company as I travel thru my journey facing breast cancer again.
Why would anyone want to read about someone else's problem when you have plenty of your own? Maybe one day a loved one, a friend, or you will be diagnosed with breast cancer. My blog might offer insite into cancer resources, thoughts, questions to ask, or guidance in helping you deal with this disease. These are my experiences and suggestions. Every breast cancer is different. If you are touched by breast cancer, be sure to consult your Dr. for direction in treatment.
I equate my blog to the emergency evacuation instruction the flight attendants do before you take off on an airplane. Nobody pays attention to them but when your plane is about to crash you think, "sh*t, why didn't I pay more attention to them? Which color cord do I pull first again?" We have so many things going on in our lives that one more thing to dwell on that doesn't apply to us right now may not be important but when it does, we wish we would have paid attention.
My blog is something you might read a couple times or maybe follow. Hopefully you gain some knowledge about breast cancer, in particular, Invasive Lobular Carcinoma (ILC). It is the 2nd most common type of invasive breast cancer however it only accounts for approx. 10% of all invasive breast cancers. It is the silent breast cancer. It is generally not detected with a mammo but rather an ultrasound. Invasive Lobular Carcinoma (ILC) is what I have been diagnosed with. My suggestion to every woman who is of mammo age insist on an ultrasound with your mammos.
UPDATE 3/2011
I have had my bilaterial mastectomy and I am recovering. ILC is a sneaky cancer as I said above. My various Dr.'s here and at UCSF confirmed the size of my tumor should be between 2.5cm-3.5cm with possibilty but not most likely, 7cm. After my surgery, my tumor was confirmed to be 11cm. My Dr.'s are very knowledgeable and are on top of things. This is simply the truth about ILC. I had mammos every 6 months, ultra sounds, and MRI's. With all of these, it was not picked up until 1/2011. The good news, if you can call it that, only 1 sentinel node out of 2 has micromastic findings and 5 aux. nodes were negative.
Be sure to start my adventure from the blog history on the right. I have tried to bold points to make it easier to extract the important information. If there is anything you get out of this blog, refer to my Dr.'s listed below if you know someone who has been diagnosed with breast cancer in the East Bay. These Dr.'s; Dr. Gottlieb, Dr. Wotowic, and Dr. Sherman are my 3 musketeers....all for 1 and 1 for all!
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