Punk Rock Mommy

We were interviewed by CN8 on Friday. That is the cable news station. October is breast cancer awareness month. They did a piece about the cancer support organization hat has been helping us, The Breathing Room. They have been really good to us and have provided us with tickets to great adventure and movies. The aquarium and Franklin Institute as well. So CN8 asked us to discuss our experience with them. I think it airs on Monday night at 9pm, 11pm, and Tuesday at 9am. We do not have cable so let us know how it turns out.

I am so glad that Kelly wrote all those powerful thoughts down. It is very challenging to let people in during a time like this. I too have days where I feel like hiding. Away from the world that knows I am “sick”. I want to pretend that I am fine. I want to keep things to myself. But the desire to help others just wins out. You may think well how does this help others? Honestly, from the comments I think it does. I think there are so many people out there who have loved ones with cancer, I think the blog just gives a bit of insight regarding the struggle. I also have a great hope that maybe someone will have read the symptoms and know before I did that there could be a problem. So I do not mind my public cancer as much as Kelly…but it is sometimes difficult for me as well.

The thing that is really hard is the great number of me who touch me and see me naked on a regular basis. When you are healthy you are only naked in front of the people you chose to be. Not me. I am expected to take off my cloths, don a gown, and let whatever specialist, med student, technician, or janitor touch my breasts. It is part of my “care”. Sometimes it makes me cry. I did not sign up for this. I do not want to be naked in front of all these people. No less than 15 different people have touched my breasts in the last 2 weeks. And none of them are married to me or paid me for the privilege. I WANT MY BODY BACK!!! I want my privacy back. I want to be able to say “No.”

It is the theme of my life right now. I want my hair back. I want my breasts back. I want the my old body back or at least the way that it felt to walk in my skin. I want my old life back. The frustration makes me want to scream. I am about to get an operation that will last 5 hours. Everyone in the room will see me naked. Every nurse will inspect my wounds and touch me. The home care nurses as well. Then the follow up appointments. The radiation oncologists. And the list goes on. And without any end in sight. No one will ask for permission. No one will chat me up first. No one will tell me they still respect me when its over.

I feel like I used to hug people more before all of this began. Right now I am so touched out that I keep a little distance. It is a sad truth. I do not love any less. I just want to keep a small piece of myself private.

Daily I experience a new challenge, lesson, or emotion about my new diagnosis. They are never what I would have predicted. This particular makes me feel extremely powerless. Maybe more so than other things. I am not powerless over my chemo symptoms (acupuncture and prayer) I have not been powerless over my treatment. But being vulnerable in front of these strangers….totally hopelessly powerless. I wish that I was an exhibitionist and that this was no big deal. But truthfully, it kills me.

So my public cancer is not just about the blog or an interview. My public cancer occurs behind pulled curtains.

The other night I read a comment from a lovely woman who took the time to share about her cancer struggle on my blog. This happens often. I know several people who read the blog who have some form of cancer. Some have IBC and some had breast cancer years ago. The comment brought tears to my eyes. Kelly said, “what’s with you cancer people?” What is with us? We are like some big club. A fight club. The first rule of fight club is you do not talk about fight club. Here I go breaking rules.

So in this club you can look at someone and know something about their struggle. Their fight. It is personal. We are fighting for our lives. We are just trying to get through the day sick and tired. Or nauseous and in pain. Maybe we are fighting to remember. We are trying to get through the appointments. The surgeries. The radiation. We may be fighting big HMO’s. Or just fighting to stay alive. It is an often emotional and bloody battle. Some of us win and some of us do not. We band together and nod in solidarity at each others struggle. We are a brotherhood or sisterhood of people with nothing and everything in common.

We know about the pain in a loved ones eyes. The way people pull away. The way others stand firm. We know how to walk on the edge..we allow ourselves to be poisoned. We fly off the handle because of steroids and hormones. We are prone to tears. We spend sleepless nights praying for God to heal us. We are fighters weakened by an invisible enemy.

Today I sat with my friend Kristine while she got chemo. I have never been on the other side of this. We talked about my upcoming surgery and her treatment as well. We talked about our relationships. We cried. She talked about how strong Ryan is to stand by her. I talked about how having cancer makes we want Kelly to go away. She knows and understands this pain I am in. Watching this man who loves me get hurt. She does not need a long explanation about anything. She is in fight club. We share a bond.

It is a club no one wants to be a member of. I really do not wish this on anyone. But I am here. And some of you reading are too. And now the gloves are on and we are left with no choice.We chose to fight. Today I want to kick cancer’s ass. Today I want to prove all those shitty statistics wrong and live a really long time.

Sometimes people feel like fighting with me. People not in my club. They try to help and understand. They are cancer people too. Their lives are changed as well. Next week begins breast cancer awareness month. My friend Shayna has been training for 3 months. She has faithfully walked mile upon mile through the summer’s heat waves to prepare for the Susan G. Komen 3 day walk in honor of her mother and I. She has only $300 left to raise. If you can spare even $10 it would help raise money for a very worthy cause, breast cancer research. Here is the link. God bless the warriors. http://www.the3day.org/philadelphia07/shayna.

Heidi asked me this morning how I feel. “Like a sausage”, I said. Really. I do not recognize the face that stares back at me anymore. While in the midst of discussing this
Joann Hulnick called me. She is the patient advocate/coordinator/Goddess/Diva at HUP. I love this woman. She has made all my problems of coordinating visits and remembering things disappear. Seriously, she is like a cancer patient’s dream girl. Today she told me that my breast surgeon is going to let the plastic surgeon “close”. Here is why this is so exciting. I am not getting reconstruction. In my situation it is not a great idea. I figure if I feel like having boobies I will buy a pair and stick them in my bra. Anyway, typically with the surgery I require the chest is left quite scarred with indentations. But this plastic surgeon can do some careful sculpting and give me the best unboob job possible. I am not expecting a miracle but I think it is plausible that I will be able to have a nice result. Yeah!!!! I mentioned to her that I feel like a sausage and she said she will set me up with a nutritionist at HUP who works with breast cancer patients. So she is even helping me with that.

Kelly and I celebrated our anniversary 3 weeks early. Well first I spent the day crying. Which as I have discussed is just such a bad idea. Sometimes “getting it out” is not a good way to go. Really it just seems to get me more upset. So I was miserable and trying to get him to be as miserable as me. Finally, he said he was going to leave and go to work. I said, “Do whatever you want”. And Kelly said, “what I want is for you to stop crying and spend time with me.” It cut through me. That it was just so poisonous to our love and relationship for me to be so isolated with my guard up. I picked myself up and we went out. And we had a really good time. And we spent money that we didn’t have. But we had a nice time. And I remember why I married Kelly. Because he’s handsome. And he is nice to me. And he is funny. And he likes me even why I do not like myself.

It is a hard thing to know you have a terminal illness. It makes you both want to run into a loved ones arms and also run away hide. It makes you want to be a better person. It makes you feel like you have nothing to give. It makes you feel isolated sometimes too. Everyone else gets to keep living…life goes on without me. That’s a hard one. But what is worse by far is to stop living before you die! To stop dreaming and enjoying this time you have. That is what I do when I just sit around feeling bad for myself. I am scared of this operation and what follows. I am also afraid of allowing myself to fall into an unproductive depression over it.

Today I had acupuncture and I left Ed in good spirits. I ate with Heidi and did not talk about cancer. I enjoyed her company and came home and did my children’s chores. Now when they get home we can just hang out together. I am excited to see them. I am going to turn off my phone and have a date with all 6 of them. That’s hot. I love my family. And they love me.

Praise God.

When life hands you lemons…. put them in your bra to make your boobs look bigger.

I am called strong all the time. I don’t really know why. I have cancer I am not running a marathon. More often than not I am happy. I laugh. But it is never the same as before I was sick. I do not feel that light feeling anymore. Its a feeling you do not know you have until it is gone. The feeling of being unburdened. But I do feel happy. I do enjoy this life that I have burdened as it is.

Usually I make a deal with myself that if I feel like crying I go ahead and cry. I cry in private for about a minute. I stop the tears after that. I know that may sound strange..but honestly I think if I just let it go it will never stop. It just seems to feed itself and I just keep crying. I cry in private because I do not want to be pitied. I do not need someone to tell me how bad this is I know it. So I impose these strict rules for engaging in emotional outbursts. But to me it seems like a good way to beat back “depression” and wallowing.

If I am going to wallow in something I chose God’s grace. Or the sweet love of my baby. Or the attention of my children. Or the genuine care of my friends. I want to wallow in something good. Not pity. I honestly believe that there are worse things that could happen. I won’t even name them but you know I am right. There are simply too many blessings in front of me to cry all the time. And as I say all the time…life is short especially mine. I need to embrace this time and enjoy my lovely family.

So in rare moments I do let my guard down but not for long. Maybe this is what has helped me avoid the emotional pitfalls associated with terminal illness. But I do have my moments. Self doubt. Resentment. Anxiety. But I try to work it out. Pray. Meditate. Count my blessings. I try to enjoy life and laugh. Even with that gnawing burden. Life is still sweet.

The first day in a week when my stomach was not in knots and Cindy decided to treat me to brunch at Sabrina’s. We indulged in banana stuffed french toast and tried to discuss everything in between gobbles of delicious carbs. I love Cindy. I love not feeling like have anything to prove. Cindy has seen me at some of the worst points in my life.She knows who I am, and she still wants to be my friend. I am fortunate because I have several close friends like that. People who know that I am capable of being irrational, cruel,and ridiculous.

I do not want to wax on about how “awful” I am. I just felt the need to comment on how good it feels to be understood and loved unconditionally. This is the other part of it. My sister stopped speaking to me after a fight we had following my diagnosis with stage 4 cancer. She has no contact with me whatsoever. Yet, I meet people who know her who also know me and apparently she does not tell them that we now no longer speak. I feel embarassed to tell them. How can I explain that my only family has turned their back on me. I really do not mean to say I am blameless for surely I am not. But what I can say is that the fact that my sister is so utterly unforgiving makes me value my close friends that much more. To err is human to forgive divine.

I say this knowing darn well that it so so difficult to forgive. And I have a very hard time doing it. I harbor resentments like everyone. But I also know that it is not good for me. Or anyone else. I know that my life goes better , my relationships smoother, when I am willing to have a soft and forgiving heart. It saddens me that my sister and I do not speak. But I am unable to do anything about it…other than attempt to forgive her.

It is hard to navigate the waters of medical care. I am fortunate that my dear friend Sheena comes to most of my appointments with me. She keeps a running list of things I need to do including getting referrals and calling about follow up appointments. I am on chemo and I often feel challenged by these “normal” things. It is very humbling to feel cognitively challenged. I often feel like I am having senior moments at the tender age of 37.

It occurred to me today while Heidi and I were at Circle Thrift that given my life expectancy I am in fact a senior citizen and these are my golden years. More likely than not, this is my retirement. I see as many doctors as an older person. Surely, I complain about my health as much. I do not work. I do not really drive anymore. I need other people to help me do the things I used to do myself. Spicy foods upset my stomach. I am often in bed by 10pm but I do not usually sleep through the night. I find myself awake at 5am wondering if I will be able to fall back to sleep. I guess if I think of this as a contemplative and reflective time of life it would be to my advantage. Maybe that is what this time is for. I am still stuck in an overwhelming sea of doctor visits, pharmacy errands, and specialist referrals. I have not had much time to meditate or emotionally adjust to the new phase of my treatment.

And the new phase right now is my upcoming surgery. Which I think I understand but the reality of it is another matter. I will not be able to hold my baby for an extended period…weeks? I will have four drain bags coming from my chest. A chest no breasts. That is a loss that I had been eager to happen at the outset but now I find myself hesitant to give them away. I breastfed all 6 of my children. I nursed them and cuddled them. Now this important physical reminder of their infancy and babyhood will be gone. And there is pure and simple sexuality. I have had breasts since I was 13..14. How do I feel about not having them? I know models don’t have any and everyone finds them sexy. But models also weigh 100lbs. I have spent a lot of time dressing to accentuate my positives. And now… I don’t know how to be me without my breasts. I know that I will figure it out. I hope that Kelly can look past it and still be attracted to me.

And beyond surgery everything is actually more unknown. I was under the impression that I would definitely get radiation. But the doctor we met with said they will take the most aggressive approach possible. But that may not mean radiation. I cried during the visit because I have never heard of someone not getting radiation. Dr. Solin assured me that he works extensively with IBC patients and is very familiar with all the work done at the IBC clinic at MD Anderson. But in the end until he sees my post surgical pathology we do not know if I will need/benefit from radiation.

So where does that leave us? Somewhat in limbo. I may in fact need to do an additional course of chemo following surgery. I may do radiation. It is hard to say. And if these treatments fail to work…I may try to get the money together to move to Santa Monica and get Rexin G. It is all a big IF. And that is a challenge as well. It is hard to live to move forward without a plan. Without knowing how to best proceed. I have entrusted many doctors with my care. But they do not know what the future holds anymore than I do. So I am literally forced by these factors to live totally in today. Because I really know very little about tomorrow. I am living out my golden years with no golf course and no cruise wear. Just lots of doctors appointments and forgetfulness.

When I first became ill I had a rush of phone calls and emails from everyone I had had contact with over the years. It was overwhelming and lovely at the same time. Now four months later I notice a pattern that I find quite sad. Many people have pulled away. Many people have stopped calling. Friends who I still feel close to no longer come by. I get few phone calls from dear friends. Oddly, people who were not as involved in my life now are. It has been interesting to witness the relationships develop with people who I had not been as “close”to before my diagnosis. Of course some old friends have dug their heels in the dirt with me. Others have quietly walked away.

I find this whole dynamic confusing. Some people seem scared. Afraid to disturb me. Afraid of remaining close to someone who will likely not be here to support them in the future. People seem unsure what to say or how to say it. Most of my sadness right comes from the fact that I am lonely. I am often too sick to do fun things. I end up spending time alone in bed. I feel like I am not good company anymore. I have cancer. That is not fun. It has a tendency to bring things down.

I miss some of the people who used to be around. I wonder sometimes if I have hurt or offended them. I hope that they did not feel like I was too needy or difficult. Ultimately, I just miss my friends and my old care free life. I miss when things seemed more simple. I can not spend a lot of time dwelling on this however since my life will never be simple again. Right now most things are far from care free. I am overwhelmed with organizing a schedule for my surgery and radiation to make sure that my family has what they need and that I can get to and from my appointments. I am struggling to maintain a healthy relationship with my husband. I am trying to love my kids and be present. I am praying to be self less. And I imagine that as a friend it is just very difficult to watch.

When my friend Sara had cancer ( the second time) I did not call her for months at a time. She was with her parents in the suburbs and I did not think I could do anything for her. I wanted to be with her. But I did not know how. When she died I was overcome with grief. Why had I avoided her? I loved her so much. And I had not really let myself say good bye. I cry when I think of her. I miss her quirky style and dry wit. I missed out on being her friend. So I am saying I know how difficult and uncomfortable it is to be friends with someone who is dying. But I am not dying…yet.

Today, I am still here. And we are still friends. I can tell you I love you. And you can come visit and hug me. You can look me in the eye and we can share a meal. I am not dead yet.

 

Interesting news on breast cancer reported by Reuters and CNN.

Praying online in a support group may help women with breast cancer cope with the disease more effectively, a new study shows.

Dr. Bret Shaw of the University of Wisconsin-Madison and his colleagues observed that patients with breast cancer who used a higher percentage of religion-related words in their communications with an Internet support group had lower levels of negative emotions, better functional well-being, and more confidence in their ability to deal with their illness.

“Patients with breast cancer who want to pray can use online support groups as a place to cope with their illness with other people going through similar situations,” Shaw told Reuters. “Our data suggest that this might make you feel better”.

Shaw decided to launch the study after observing how common it was for people to use prayer in online support groups. “We noticed a lot of people were exchanging prayers on line, praying for themselves and other group participants,” he said.

However, he added that “some women were so kind of turned off by the overly religious tone of the groups that they did not want to participate”.

To investigate the health, social and emotional effects of online prayer for women with breast cancer, Shaw and his team loaned a group of women computers associated with the Web. They also provided training on computer and Internet use. The women were surveyed at the study’s outset and again after four months of support group participation.

Among the 97 women who posted more than twice to the group, those who used a higher percentage of religion-related words (such as bless, faith, heaven and pray) showed lower levels of negative emotions, better functional well-being, and greater health-related self-efficacy, meaning they had more confidence in their ability to cope with their illness.

But there was no association between the use of religion-related words and women’s levels of breast cancer-related concerns, emotional well being, social support, or positive reframing, a coping strategy that involves looking at a challenge in a more positive light.