Punk Rock Mommy

There are so many morbidly funny things I do not write in this blog. Mostly because I think it would upset people . But if we are friends ask me to tell you the benefits of dying young. Or my top ten reasons why its good I have cancer. Or about my friend Death. Oh it is so fantastically dark. Most of the time laughing is a way to diffuse the intensity of terminal illness. I mean that’s what a therapist would likely say. I am not a therapist. I am however terminally ill. And sometimes..cancer is funny.

I occasionally find myself in this awkward position in which I am telling someone I have cancer and they tell a happy ending story about so and so who had cancer and survived. I know this is meant as a loving attempt at support. But I wondered to myself recently if anyone actually dies from cancer since everyone is always saying so and so lived. I may be overreacting to this whole cancer is deadly thing. Maybe I am being too pessimistic.

Today was my day at acupuncture. Heidi brought me out to the Won Institute where our friend Doreen and her partner in crime Lynn asked me a million questions about my health or illness really. Their teacher Ann told me I had a perfect tongue. Really..she said it was like a super healthy tongue. Better than an athlete’s. I am not lying. I had 7 needles put in me. It didn’t hurt a bit. It felt sort of weird-nerve ending-kind of sensation. Doreen said this was mostly for my nausea and g.i. issues. I felt some interesting muscle spasms. then had a distinct feeling of the blood flowing through my entire body. Then I became aware of my organs and then my abdomen. I wasn’t sure how to process what was going on exactly. When Doreen came back I asked her to do a relaxation exercise with me. She asked me to inhale the Golden light all around me that was God. And visualize it entering my body. I imagined the exhalations carrying away my tension. I imagined it eating my cancer. I let my body float away. As I did this water flowed from my eyes but it was not like “crying”. I had as little control over this as one does of perspiring. It was my body ridding itself of pain that I no longer even felt. The release was wonderful. I felt better for hours after. I do not know what other people have experienced with acupuncture. But I thought it was really powerful. I am looking forward to going again. If any of you are interested give them a call. It was great.

I am moving out of the bad into the maybe week. Maybe I will feel well enough to go do things. Maybe I will feel well enough to do dishes/cook/care for Clay. Or maybe I will be completely overwhelmed and feel too sick to do _______. So maybe we can see each other. Or maybe not.

Jesse comes home from Spain Wednesday. I miss him so much it’s killing me. I don’t like being apart from my children. Never have. But I love them being independent. So its worth the missing him. Anyway, he promised me he would blog about his trip when he gets back. I was so happy. Now if I could just get any of them to talk about their feelings that would be great.

I will talk to you all soon. Andrea

I can’t stop the birds of sorrow from circling my head, but I can keep them
from building a nest in my hair. Chinese Proverb

Sadly though, some days I do feel I need to duck to keep them from shitting on my head. I realize that my bad week is really 10 days. I also feel totally out of the loop with my family, friends, and real life after being in bed for 5 or 6 days.  I think if we are friends and I have neglected to ask you how you are #1 I am sorry. #2 Please tell me. And if you don’t  mind feel free to let me know anything important that is happening in the real world.

Sorrow is something I play dodge ball with. Remember dodge ball. Bob and weave. That’s me with sorrow. I do not want to get tagged. I avoid unpleasant thoughts. I sleep. I pray. I play with Clayton. I bob, weave,duck, and cover. I am a rock. No sir, no crying for me. I have happy cancer. Happy Happy.

Ultimately, when sorrow does hit me I feel it and then let it pass. I bet that all of you can say the same though. Unless you are clinically depressed we all feel sad and move on. Having a terminal illness does not mean that I am the only sad person out there struggling to keep it together. You cry..I know you do..admit it. And you are going through tough stuff too. Maybe your family suck. Or your job. Or your boyfriend/girlfriend. It doesn’t matter. Its all real. It all is hard. Life is hard. All I am saying is I realize that I do not corner the market on sad things happening in one’s life. Fact is I like hearing how bummed out people get. That’s why I wanted to be a psychologist. Other people’s problems make me happy. Not happy..but relieved. We are all going through it together.

I want you to know that I  am praying for you. My friend with the bad job. My friend with the sick sister. My friend with money problems. My friend who needs to get sober. All of you who are going through your own  troubles… I pray for God’s grace in your life. I pray for your comfort. I pray that the bird’s of sorrow do not build a nest in your hair.

After I announced to everyone that I had cancer I often felt overwhelmed by the love and concern that people showed me. There were a lot of phone calls and emails. Eventually setting up this blog as a means of communication became an ideal format to translate all necessary information. On my good weeks there often 6-8 extra people rolling through my house, which honestly I enjoy. I am not a loner. I do not need a lot of “me” time. Hence the six kids..I just wanted someone to play with.

When I am sick I find myself much more in need of refuge. This seems like a natural instinct. I bury myself under covers and listen to whirring of the air conditioner. I cover the windows so light doesn’t invade my senses. The chemo medicine seems to make me sensitive to light. I sleep for hours. I get up and sleep some more. I hide. And bless your hearts you all seem to forgo calls and settle for warm wishes via the blog or emails. Thank you for letting me hide.

Today I am more aware of another desire for hiding. I realize now that when I leave the house I look like I have cancer. When my hair was short I did not look “abnormal”. Now people will know..or suspect..maybe they will think I am gay..which is nicer then them thinking I am sick.Or maybe strangers will ask me….”Do you have cancer?” Do people do that? When I was pregnant with Alec I hated people asking me when I was due. All I could think was great…now everyone knows I have sex! Now, I dread going out…People will know I have cancer. The scarlet “C”. I think about the benefit that my friends are putting together or even church and I think I do not want people to see me like this. Bald…sick..now I know why people with terminal illness hide. We don’t want to bum out the healthy folk. We don’t want to remind you of your own mortality or ours. We don’t want to harsh your mellow. I know I know you are saying I love you..it doesn’t matter what you look like. But its a different story when you walk into the real world.

My good friends Clarence and Lhianna are in Spain. But since my diagnosis their home has become the best place for me to hide. I sit in the hammock chair with Clayton and forget everything. My children laugh and swim. Clarence sings for us and plays guitar. Lhianna cooks. And I forget that I have cancer. I am relaxed. I don’t answer the phone. There is nothing for me to do except love my kids and friends. And I feel so lucky to have that physical place to hide.

Lately, too I have felt like I am hiding in prayer as well. I just feel fear welling up and instantly turn my thoughts to God. “Father I accept your will in my life and thank you for all my blessings.” I just let the prayers carry away my pain and doubt. I am grateful that God has given me a place to hide.

 

Today is the BAD DAY. I feel awful. Its the day when I just want to sleep, but sometimes I can’t. I thought I would touch base with you about the nature of chemo and its symptoms. Ultimately here is what I know so far. I am on three chemotherapy medications. All of which are both saving my life and carry there own specific side effects. For example sharp pain in breast,short term memory loss, fatigue, digestive problems. So I am prescribed several other medicines to counteract the imbalance caused by chemotherapy. I do not like these additional medicines because they too have side effects and it just seems to snowball. I am using the shiatsu massage and soon will be getting regular acupuncture to alleviate as many of these symptoms as possible. I drink ginger for nausea. Other problems I just accept. There is a difference between pain and suffering. I am not suffering. I am uncomfortable. I think the holistic stuff really helps in avoiding more and more unnecessary medicine. And honestly avoiding my insurance company is a pleasure. If I am tired I sleep. If I am nauseous I drink ginger or get sick which is actually a relief. If I have a headache I will take some ibuprofen or better yet meditate. I feel putting off high volume pill taking will be better off for me in the long run. Thanks for caring about any of this stuff. Andrea

No more hair!!! I have some serious bald spots on top. Stubble all the way around. I actually like it. I may still lose more but it won’t be as upsetting. Jon O took photos of course. And he has a bunch to post. He also forced me to do a monologue for the photos on flickr. I wanted someone else to do it. My voice is so not that cute. But I did it anyway.

Jesse emailed today from Spain. He said he took off on his own to the beach. He loves Spain and said that he wished I was there. Me too! It’s interesting because I wanted to bring him to Mexico. I thought he would love it. Now he wants me to go to Spain. Its beautiful. I also spoke to Bailey. She swam all day and went to the movies. She is having a lovely day.

I felt tired all day due to lack of sleep.But I wasn’t sick at all. Headache -y. I am going to bed. It has been a really long day. Thank you all for your comments. They make me happy. And thanks to Shelley Crognale for an awesome dinner. And a sweet goodbye to Rebbecca Six. You were so helpful in planning all those meals. You rock. Come back to Philly soon. Andrea

Well my hair is coming out in large clumps and it tingles and feels sore. Something like if you had pins and needles in your head or when you have the flu and you feel all your hair and it aches. I have decided to buzz it down to stubble so to end the trauma of loss and the discomfort as well. That’s tomorrow.

Today I had my chemo. I went with good friends Don and Sheena. We got the earliest appointment and as a result I got the most lovely private widow seat with a view of the park. I got a very nice shiatsu massage.We all laughed all day and enjoyed the time. As the day worn on however the spacey high feeling set in and I became less and less coherent. I also became agitated. I felt stressed by the things to do. They were insignificant at best yet totally overwhelming. My doctor, the ever lovely Ingrid, changed some of my meds. The pharmacy said the insurance company would not pay for them. The ins. co.said she had not pre- authorized them. The authorization lady was mean to me and I was really upset by this. Then the doctor called and said it was taken care of..but it wasn’t. Kelly went all the way back to the pharmacy for a script that can’t be filled until the 23rd. A day that I plan to do nothing but be in bed and feel yucky. Bureaucracy gives me a bad one!

But on the good side Ingrid did an exam and found that my breast was much much softer and that there was a significant change in my swelling under my arm as well as the swelling in my neck. She seemed pleased with my body’s response to the chemo. So all your prayers. prayer circles, nuns from Peru, and bulletins are doing a the job. Now I am going to post this too. My blood count is very very good. My body and immune system are responding very well. I got her permission to get tattooed on the third week after chemo and I am thinking about getting my head tattooed with something pretty maybe flowers. Please feel free to send photos or thoughts.Please keep negative comments to yourself. I trust my doctor.

Bailey and Jesse have landed safe and sound. Jesse flew first to England had a 5 hour layover, then flew to Spain and had to get a train from there. All in all it took 20+ hours. Bailey’s flight went better. Linda said they were put a non stop flight because there original flight was overbooked. Bailey reported that even though she was yawning and chewing gum her ears still hurt when she landed. She also said that she noticed A LOT of pools in Florida as they landed.

When I got home I really felt to out of it to hold Clay. And I am typing this but thank goodness for spell check cause I am a mess! I hope to write in something whenever up to it. Please feel free to comment and say hi. I accidentally hit spam for a comment that I was trying to read. Please make sure yours got posted. I will see if Jon can undo that.

I love you all. Thanks for all your support. Andrea

On my head
Hi honey I’m home. As I write this hair is falling all over the keyboard. It is June and the dog and I are both shedding. Somehow I thought that it was not going to happen. I am on a medication called taxotere which it says causes thinning but not baldness. My head is all prickly and itchy and hair is falling out all over the place. It is not supposed to happen. Oh well. I am thinking that I am not a wig kinda girl. If any of you are expert turban makers let me know.

On Dads
Yesterday we went to Brooklyn to see Jay Bakker speak at his church Revolution. It was amazing. He preached on the Our Father, revealing that the actual word Christ used was Abba, which translates to Daddy not Father. So many of us have painful connections with the word Dad. Our dad’s failed us I know mine did. But as Jay was preaching I realized that we need to be careful to remember our “Abba” is not like our earthly father at all. God wants only to care for us and protect us. Sorry to be preaching to y’all, but I was really moved. It felt so good to be in New York. I felt great physically and really relaxed. I got to enjoy the company of some close friends and really good food.

On Wednesday and the Daze that follow
I am not looking forward to Wednesday which is treatment #2. I had anxiety the first time which has been replaced by dread. Dread because of the fatigue,nausea,memory loss,sharp pain in the boob etc. I am just not looking forward to it. The kids are all going away cept’ Clay and Alec. I am glad for them to be missing the bad week. My whole life now revolves around the good week and the bad week. And in between is a week where I may or may not feel bad. In any case, as happy as I am for them I realize that all their chores still have to get done. I ask myself what if I am too sick to do X? I feel really good today. So it seems strange to plan on being too sick to live your life in a manner you are used to. Yeah sorry Rob I would love to go to that puppet show but I may be vomiting that day. It still seems very surreal..and then I touch the catheter in my chest and think yes its real, not a dream. When I wake up in the morning their is a hazy second where I forget..then my conscious mind gives me the morning update…. “Good morning this is your brain , you have Inflammatory breast cancer, just wanted to remind you.”

So as I enter the 5th level of hell I want to say I will talk to you as soon as I can. I may have Kelly fill in for me for a minute while I get busy with my coma. I will let John document the good the bad and the ugly so be prepared for anything. Also if I do not return a phone call for a few days try not to take it personally. If you really want to help with anything call Kelly. I think that visits will need to be short and sweet. I look forward to hanging out on my good week. Kelly is working at Body Graphics today (Monday) and on Friday and Saturday at the 4TH Street location.If you are interested in a solidarity nautical star give him a call or email him. I appreciate your support. Love you all and thanks for praying.