Punk Rock Mommy

Have you ever googled your name? It is super silly right. I only did it because I saw that some people find my blog by googling my name. I was curious what comes up. I know there are probaly many Andrea Collin’s. Actually, there are 491 to be exact. {www.howmanyofme.com} There is an artist in Pittsburgh with my name. She is my age. She also has 5 children in the age range of my kids (sans Clay). How interesting I thought. There is Andrea Collins the poet. She went to Penn State. There are a few doctors and real estate agents. And one actress. But most significant is Andrea “Andi” Collins. Who died at the age of 16 after a 9 month battle with Inflammatory Breast Cancer. Below are some of the words used to describe her.

**We all know and admire Andi Collins as a young woman of outstanding character, intelligence, strength, and beauty. “

(in 2003 the 16 year old Andrea Collins who died of Inflammatory Breast Cancer at a VERY young age after a 9 month battle with the disease}.

I know its just coincidence. I know I have a fairly common name. But still…IBC is even more rare than that. It effects only 1% to 3% of breast cancer. And how rare is it that a 16 year old girl should get breast cancer? Well IBC is that cancer. It is so hard to believe that the 16 year old girl had to face this as well. So Andrea and I shared a name and a rare disease. I pray that God will give me more than 10 months to be with my family.

I am always looking for the interconnectedness of human lives. Believing that we are all related to one another. Cosmic siblings. We all seem to overlap with one another. It helps me to think of the world as a place far less chaotic and random then it most likely is. I often feel that everything has a purpose and was meant to be. All experiences both good and bad are just meant to help us grow and change.

I don’t know why exactly I wanted you to know about the other Andrea Collins. I guess I feel sorry for her and her family…she was 16. Alec is older than that and I can not even imagine what it is like to lose a child. But to experience breast cancer at that age seems so wrong. I feel a lot of empathy for people these days. Somehow my circumstances have made me more aware of the fragility of the human condition. It has made me more concerned about others.

Kelly tattooed Ryan last night. Chubbrock decided to get an his personal hommage to breast cancer. No pink star here. Ryan got a pair of flying breasts with the traditional dagger going right through them. His own personal flying mastectomy. F*** cancer. The beast. I thought it a lovely gesture. I was touched.

I read a statistic yesterday that said one in nine women now get breast cancer. That boggles my mind. I think about how hard it is to go through this sometimes. The way it effects my husband, children, and friends.  I feel bad for them. Sometimes I feel bad for me. I always feel like I am swimming in unchartered water. How can I be a good mom and be sick? Or a good wife or friend? I am learning how to live with terminal illness. And its a rough road. Sometimes I don’t want to talk about it..sometimes its all I can talk about. I want to forget I am sick….but I look in the mirror and realize I am. Chemotherapy has a dramatic influence on my current appearance. It now takes me an hour to get ready to leave the house. Fake eyebrows, lashes,hair. And with the steroid driven weight gain I honestly do not recognize myself anymore. I am daily trying to adjust to the physical changes both inward and outward. And my children and husband are equally effected. I see them working to accept my limitations. Trying to be sympathetic and selfless for me. We are all struggling to grow and love each other. And its never quite as seamless as we want it to be.

I am not sure how this all works out. Right now it seems most everything is a struggle. Money- marriage-children-friendships. Things are rarely light and easy. I wish for amnesia. Or some brain thing like in 50 first dates. A day in which I forget I have cancer. Can I get a day? The kids and Kelly are at Great Adventure. I am alone with Clay. Actually i do not remember the last time I was alone with Clay. I have nothing to prove to Clayton. He is not embarrassed that I am fat and bald. He doesn’t need much in the way of conversation. He’s pretty happy with some wood blocks and to sit in my lap. I do not feel particularly sick today as I had the awesome golden acupuncture yesterday. Maybe today is my day. Today I am not going to die. Today I am not “sick”. Today with Clayton I am a fat bald mommy. And I am going to spend the rest of today forgetting I have cancer.

Today is Monday. I have been sleeping almost non stop since Friday. I went out to the fund raiser on Saturday. It was a lot of fun. Needles was awesome calling bingo. He would slur… “b4″  ” I was drunk b4 I got here” Or … “I 21…that’s what she said to get in the bar…I 21”. Well Ruthie and I were hysterical. I think Rob was too. There were not that many people there. A lot of people don’t seem to find out about these things until after. That’s a shame because they are super fun.

I really appreciate all the people that work hard to help our family out. At this time things are hard since Kelly can not work more than 3-4 days a week. I am not well enough to watch Clay full time while undergoing chemo. If I do not get into the study I am facing a double mastectomy, twice a day radiation, and a year of hormone therapy. If I do get in I will be in California for up to a year with the baby and Jesse. Anyway you slice it – all the help is both a God send and a necessity. Personally, I do not expect anything from anyone. It is always truly moving to me when my friends go above and beyond and organize and attend these events. It means a lot to me that people are willing to help us out so consistently with meals,childcare, and rides. I know I say thank you all the time… but it truly moves me to be loved by you.

As far as today goes…I have had better. My fingers and toes are now almost all numb. My eyelids twitch and my eyes are shaking in their sockets. I am exhausted and feeling very out of it. I tried to read today. That was funny because I read the same sentence three times. I am not even sure how I am doing this typing. Thank God for spell check. I am trying to enjoy the day…but my teenagers ( all of them) are on my last nerve. They refuse to listen or help. And they ate an entire tray of brownies and all claim to not have eaten them. I am so tired. And they have an endless ability to annoy me and avoid doing anything I ask.

Almost without exception everything is very normal. The new normal. Because the old normal did not include the symptoms of chemotherapy and praying to get into clinical trials. I am looking forward to going out to Santa Monica. I leave next Tuesday very early. Some people have volunteered to help out with the kids while I am gone. What I really need is someone to help kick them in the butt and make them do their summer – school work…you know like book reports and college applications. Today is hard so I am really focusing on what tomorrow has to offer. Hopefully, some relief from chemo coma…chemo brain…shaky eyes …and crabby teens.

Peace Andrea

Now that I am almost done the chemo portion of my treatment…or at least my first chemo. I thought it might be fun to let you in on the details of my symptoms for the last 3 months. So here is a list in no particular order of all the things that I experienced from chemo medication. I starred the ones that improved/were fixed with acupuncture.

Hair loss- head to toe hair loss. I have not used a razor in months. And certain things women pay big money to wax off.

Weird ones- my legs feel like I am walking in mud. Sometimes I feel like I am made of jello. Sensitivity to alcohol. Half a drink made my face turn red and made me feel out of it. I am on these chemo drugs so I think my liver is like,” you are f*ing kidding right?”  And the fingers on my left hand are numb.Totally and completely numb. Which I do not really like.

Chemo brain- I have a noticeable and  severe temporary loss of cognitive function following chemo. I leave feeling like I was at the bar all day. The buzz – the high. None of the silliness though. It takes a week for me to feel confident in conversations. I also forget what things are called. I also can’t seem to filter out noise when I am trying to have a conversation.

Chemo coma- this is the big sleep. So on the first day or two following treatment I am tired, but can’t sleep. Which is weird because I can’t think either. Then all I do Friday, Saturday, Sunday, and most of Monday is lay in bed. I usually sleep all day and night. I have to crawl into acupuncture on Friday. And then it is sleepy time until Monday. Then acupuncture again Wednesday and its smooth sailing for 2 weeks until treatment.

Stomach and digestive ailments- this included severe nausea* diarrhea***cramps*

Weight gain?- Yeah. Well I gained 30+ pounds in three months from being on steroids. What a bummer. I thought I was gonna get skinny. No such luck. I had to cross it off my top ten reasons what its good that I got cancer. I am eating really well though. I eat fish and veggies every day. And no sugar after like 3 pm. I am trying to keep to that and I feel really good.

Migraines and tension headaches- these were initially pretty debilitating. I have not had any since third treatment.***

Eyes- extreme sensitivity to light. Excessive eye twitching***. Ed put a lot of needles in my eye lids to fix the twitching. He said I looked like Hellraiser.

Emotions- These were caused by steroids(anger). Lupron(despondency,crying,suicidal thoughts,depression).****  Ed and Doreen put needles in my ears. And talked to me. And my friends and family also help in keeping me in touch with reality. My emotions are not “reality”

Blood counts- typically quick reproducing cells are compromised by chemotherapy because the poison does not know the difference between good cells and cancer cells. So chemo patients tend to gradually get worse over the course of treatment. I have gotten better. My blood work has come back and looks like I am not on chemo at all! I have a slightly low red blood cell count. But I had that before treatment.********** I told you that Ed has been doing blood building stuff for me as well.

So I do credit the treatment from Doreen and Ed at Won Institute for my health.  The treatments have offset most of the difficult symptoms I have/had. It is really amazing to me the difference it has made with this experience.

I also realize that so so many people are praying to every known god and deity. I bless my chemo. And overall I have a bit spit and fire in me. So maybe its all those things together. Ultimately, I just want to let you all know what its been like for me but also say I am doing very well. I love your visits and all your emails, calls, meals, kisses, well wishes, blog comments, etc. I am super fortunate and blessed by you. Thank you for planning fund raisers. Taking me to the hospital for treatment and tests. Taking me to acupuncture. Hanging with my kids. And just listening to me talk about this journey. Here is my story. You all play a role. But the only bad guy is cancer and F him. I love you all. Andrea

I just want to say thank you to all the lovely people reading the blog and commenting. It is so nice to have you join me in this. When I write I usually pretend no one will read it so that I do not censor myself too much. I feel very fortunate to have such a fine group of people supporting me and encouraging me in this. I feel blessed and strengthened by your prayers and love.

I am feeling far less anxious then I was for quite a while. Everything with my treatment seemed so up in the air. Now I have two strong plans. Both seem well thought out and I have confidence in their ability to aid in my recovery.

Plan A: http://147.52.72.117/IJO/2006/volume29/number5/1053.pdf. This is the most recent medical journal article about Rexin G. The results seem very promising.

For me Plan A is still the Rexin G study. Here is what I(God really) have been able to put together. Kelly’s Grandma Wilma and her husband Lawrence were head of the Salvation Army for most of their adult lives. Wilma lives in Southern California. And her nephew now heads the Salvation Army there. She felt that they might be able to assist me in some way. I think if I get in..and that is indeed a big IF… I will try to put together a detailed list of things we will need. I am looking for a place to stay for cheap or free while there so that my expenses are low. I plan on trying to find housing right in Santa Monica so I will not need a car. An expense I can not afford. I have found out that I can get free transportation to and from the facility for treatment. I can get California medical assistance after residency  is established. That will cover my blood work and tests during the time I am in the study. But the rest is still somewhat unknown. I am trying to just do this one step at a time.

Plan B:

Plan B is staying here in Philadelphia and doing the standard plan of care for someone in my situation. But my situation may have changed from what I was initially told. If you remember I was told that my bone scan and cat scan came back negative for cancer in my bones. But the pet scan came back positive. It turns out that pet scans have a very high false positive rate. Further, all the places that I am told I have bone cancer may in fact be lymph tissue and not bone at all. This is an entirely reasonable possibility. But still just a possibility. It is my hope of course since even though I would still be stage 4, because of the metastisis in the neck a lymph nodes throughout my body, it would be possible for me to become N.E.D. (no evidence of disease). So plan B is this.  1) I finish my next two chemo treatments.  2) I am re scanned. And for the first time I will get an MRI of my sternum to assess whether it is bone or lymph cancer.  3) I will get a double mastectomy. 4) I will get radiation. 5) I will continue to get herceptin for a year. This is because I am Her2+. This will be done every three weeks via my port. 6) I will also get tamoxifen which is another hormone treatment since 90% of my cancer is hormone driven.

So I still have a long road ahead of me in terms of treatment. The biggest risk is recurrence which happens very frequently with IBC patients. Often within the first 24 months. One day at a time I feel it will be whatever it is supposed to be. I am not afraid or unhappy about the prospect of either treatment. I prefer the Rexin G. But I may get the surgery after the Rexin G study anyway. It is really superfluous right now though. My main goal is to just be happy today. With whatever God chooses for me. If you pray…pray for God to heal me. Pray that my cancer is not in my bones. Pray for world Peace and that we send our troops home from this awful war. Pray that we treat each other like friends not enemies. Pray for more love and kindness to pass between us than bitterness and anger.

Thank you all so much for listening. Wednesday is chemo. Only one left after that. One day at a time. I am feeling hopeful about the future. And yet still trying to just accept God’s will in my life. I do not want to make things happen by my own will. I am feeling God’s movement in all these things. I hope you feel His presence in your life as well.

Much love to you all. Andrea

As many of you may already know, when I was first diagnosed Kelly and I came up with the idea of having people get pink nautical star tattoos to be in solidarity with me. He called it the punk rock pink ribbon. From there many of you lovingly chose to permanently mark your bodies. I am so thankful for this certainly gives a new voice to the breast cancer awareness issue. It gives you all an opportunity to say “my friend Andrea has inflammatory breast cancer. ” And it gives you all a chance to tell people/women about the disease.

When we found out people were doing fund raisers for our family Kelly and I took a chunk of money and made these lovely Eagle t shirts emblazoned with our lovely pink nautical stars. They are very cool actually. We sold some at the M room. But we still have 100+ left ( no mediums). They are sitting in my room. They are nicely folded in a big box. We would like to sell them to you. If you are interested please call/email/or leave a comment. We will ship them to you. Kelly says we can sell them and ship them for $20 each. Let me know if you want one. And of course if you want to get the pink solidarity star, Kelly is at body graphics Monday through Wednesday.

So after a very eventful week of being on the radio and having a lot of people comment on my diet..etc. I can say this..I am not at all interested in this debate. Not at all. We can stop discussing all the issues of cellular requirements blah blah blah. I want to talk about what feels empowering to me. I want to talk about life. And how to live in the moment. I want to talk about the struggle to remain positive in a sea of negativity. I want to talk about God making His presence known and His perfect plan. If you have a need to comment about ways I could have prevented my genetic malfunction comment on someone else’s blog.

That said… It is true that I started writing this to let my loved ones know how I am. And I realize that quite a few of you are not personal friends. So if I am sharing something universal that you relate to that’s awesome. I am just doing the best I can on any given day. Sometimes I am successful and other times I am not. I appreciate all the love and support I receive from those of you that take the time to read my thoughts. I hope something in what I say enriches your life. This experience while sad and tragic for my family has also given me a strong desire to create change in my daily life. And it is this motivation that dictates much of what you read in the blog. I always wanted to be a therapist and help people. I did not get a chance to do that and I am not sure that I ever will. But somehow I think that if I am helping you through the things that I share well then that is a wonderful thing.