Punk Rock Mommy

I had acupuncture today but I am still very sick and tired. I am just checking in to say that several people have said they will bring food for the 19th…Mary Kate called it first so I filled her in on the calendar. However, if you think you want to make a meal I think we will need them on even days from October 10th for like 4 to 6 weeks. That is a lot of dinners. We will work it out I am sure. All this planning is bit daunting. I will begin radiation only a week after my surgery. So while I am still a bit banged up from that I will need to go to to HUP in West Philly daily for radiation. I don’t know how that is going to work out either. I trust God to put all this right. I am praying daily that I rest in the knowledge that He cares for me and His provision is sufficient. I have to go lay down I feel awful. I will write more later. Andrea

Today I met with the breast surgeon. He is actually the head of breast surgery at U of P. He is not a friendly-funny-easygoing type. No sir he is all business. In my case that is rough, I like people who laugh at my jokes and make pleasant conversation. But he is “The Man” when it comes to surgery.

Here is an overview for anyone who might be interested. I will have a double mastectomy on either the 11th or 12th of October or the following week( 18th or 19th). I will not be having reconstruction(new boobies) because it is not recommended with IBC. At least not at first.Also new ones will make radiation difficult. So I will be flat chested for the first time since 5th grade. I think I am going to get my chest tattooed and rock wife beaters.

Next so…I will be in the hospital over the weekend and leave there on Sunday or Monday morning. After that a home care nurse will visit me once a day to check on my drains. Drains will be attached to me to facilitate the draining of bodily liquids from the wound blood and fluids. Gross right? They will be there until my follow up appointment with him. I will be recovering though for up to six weeks. He is going to do two different procedures on me. On the left breast that has cancer he will do a modified radical mastectomy on the right a bilateral mastectomy. The mrm is more serious. The surgery should take 3 to 4 hours.

Honestly, he made the whole thing seem routine. Most likely because for him it is. I feel good about it I just want him to get all the cancer he can. I am nervous a little. He said there is no way to do this without there being a big scar across my chest. I know scars are cool…but I have my doubts about this one.

I feel overall good about this process. Mostly because I know that it is a good thing to remove the “bulk of the disease” , as my breast is now affectionately referred to by my oncologists. I am sure I will go through a whole series of emotions regarding the loss of the “ladies”. Right now I feel fairly analytical about it, other than anxiety about the pain and recovery.

Thanks everyone for your love and support.

I just didn’t want to go another day without writing some things down. First, thank yous to everyone who attended the brunch fund raiser at Ida Mae’s. And thanks to Mary Kate and her staff. I am truly blessed by all of you. I hope that everyone enjoyed themselves and had a good time, good food, and talked to great people.

School has started for the kids and it is a big change to not have them home with me. I am famous for keeping them home to hang out together. It will be really hard for me to resist that urge. I really want them to be with me all the time.Since returning from California Clay has begun crawling at lightning pace . I can not turn my back for a second or he is into trouble. Jeeter is in the process of building some gates to keep Clayton from tumbling down the stairs or getting into random mischief. My 10 month old started up the stairs this morning with me right behind him. By the time he got to the top his sweaty body was covered in random dirt and hair. We took the next logical step and headed for the tub. I let him take a really long bath. He really enjoyed it. I dunked my feet in the bath too. Babies, gotta love em’.

I am trying to battle some depression right now. I am not sure why. It is the first time since my diagnosis that I have been truly sad. I am trying to cling to joy and be at peace. Having a rosy outlook is not always easy. I feel like a brick is sitting on my chest.

Speaking of my chest…Tuesday is 9/11 and I have an appointment with the breast surgeon. ( Because these twin towers are coming down) We are going to go over all the details of my surgery. I have a lot of questions. Mostly about the recovery. I know that it will be a real challenge. Karen is coming for about two weeks to take care of me/the kids. If you want to help there are a bunch of things we will need. Meals, childcare, errands etc. After my surgery I will start radiation. For that I will need to go daily to U of Penn. I am not even sure how to juggle that with the housework,kids,dinner,thing. I guess we will work it out.

I wish I could be excited about finishing up chemo but honestly I know too much to be happy. Truth is this my first time but probaly not the last on chemo. It is more likely that at some point in the next 18-24 months I will have a serious recurrence that may or may not respond to chemo. I have a 30% chance of living five years and a 1% chance of living 10. If you were a gambler would you like those odds?

I just hope for a cure. I pray to be in those small minorities. I plan on getting into a nanotechnology study if I can. I trust that God will be merciful and give me time to spend with my friends and family. I try to live each day as if it were my last.

I will try to be a little cheerier I promise. Today I can only muster pragmatism and gratitude.

Love, Andrea

PS We need a meal for the 19th of September. Any one up for that?

I am still in Santa Rosa. But I leave here at 6a.m. for the airport.I miss Kelly.His pictures are everywhere.I see his 21 year old face staring at me.His 17 year old face in profile.His newlywed face.I wish he had made this trip with me.It was a lovely visit with his family.They were all so good to me. I wish my kids could have come and spent time with Kelly’s relatives…Karen and Bill…Sue and Joe…Grandmas Barbara and Wilma…Chris and Wendy and their lovely boys Dante and Gio. I miss my children.I want to snuggle with my baby.I want my 39year old husband to give me a kiss. I want to be home with my family. They all seemed so hesitant to part with me for even a few days. I said to Alec before I left, “what’s the big deal I have left you before.” He said, “you didn’t have cancer before.” True.Our time seems more precious. So I miss them and can’t wait to be with them.

On Wednesday I will have my last chemo. Something to be happy about I suppose but I think the hard part is still yet to come. I have no one slotted to go with me, any takers? I am trying to remain positive about treatment and the future. I also realize that a double mastectomy and radiation will have their challenges as well. I rely on God to strengthen me. I have a lot of faith. I know that whatever I endure, while difficult, is not insurmountable. We all have our crosses to bear.

I hope if you are reading this that you are either planning to go to Ida Mae’s or you went. Please let me know if you were able to make it. I just love Mary Kate, Joey, and her staff so much for this.What a truly loving gesture. Thank you all so so much. I am so fortunate to know you.

I love you all so much.Thank you for your continued love and support.Andrea

Hi from sunny California!!!! My phone has been ringing off the hook. So I thought I should fill you in on the weeks events.

I had a great flight. Except I had the window seat and I had to pee really bad…and the people next to me were sleeping and I was too polite to wake them. So I held it in for 2 hours. And I was randomly chosen twice to have my luggage checked before leaving Philadelphia.Which made me the last one on the plane.

I went from the airport to Kelly’s grandmas’ house…to Glendale ( all on Tuesday 15 hours of traveling). Wednesday from Glendale to Santa Monica to Redondo Beach to Glendale. Thursday we traveled back to Milbrae and stayed with Kelly’s grandma. Friday we traveled to San Francisco and saw Chinatown,the lower Haight,the Mission,Fisherman’s wharf,the Japanese tea garden,theDeYoung museum, the Golden Gate bridge, Palace of Fine Arts, Ghiardelli Square,and the marina. Then we drove to Karen’s ( Kelly’s mom) house in Santa Monica. Whew!!! Not bad for a chemo chick.

I know you want to hear what happened at the Santa Monica appointment. My brain is fried.   So here Kelly’s mom, Karen will fill you in, so I can put up my swollen feet and lay my tired body down for a well-needed rest.

Karen’s take on the Santa Monica experience:  We arrived early in Santa Monica to locate the clinic and fill out forms.  The office of Drs. Chawla and Chondra were very professional and welcoming.  The intake clerk was impressed that Andrea had brought copies of all her health records, and that he didn’t have to make copies of anything.  We were seen within 15 min. of our appointment time.  Dr. Chondra did an examination and listened to Andrea’s recitation of her disease and treatment so far.  As I listened to her speak, sitting cross-legged on the examining table with her white linen pants and black turban, her intelligence and earnest desire to be a full partner in her treatment impressed me deeply.  Dr. Chondra seemed very concerned about choosing the best course for her.  After listening to her history, he asked her whether the course of treatment she had been receiving up to now had been at all effective.  She answered,”Yes.” He replied, “If you were my sister, I would tell you to stay with what is working.  Rexin-G is in such early stages that if it were a baby in utero, we wouldn’t even be able to determine the sex of it yet.”  It is too soon to tell if it will work.  And furthermore, the government regulation of this trial will only allow those whose cancer has failed to respond to treatment to enter the trial.  He said that in all other respects she did meet the criteria for the trial, and they would keep her file in the event she reaches a point where her treatment is failing, and admit her at that time.  The interview ended with Andrea saying, “In case we don’t meet again, I’ll see you in the next life.”  Dr. Chondra responded, “In the next life I will say hello to you.”  They were smiling as they said good-bye.  I was crying.  The feeling we both had was positive about the interview and the professionalism of the doctors, as well as their concern for her.  We felt that Rexin-G would be a good back-up plan should she need it down the road.  And Andrea definitely had a positive response to Santa Monica as a place to live while getting treatment.  The trip was definitely worth while in those terms.  On a personal level, I was very delighted to have the opportunity to spend time with Andrea.

Everything I did today was in preparation of my trip. I leave tomorrow. I love to fly so I feel good about that. Liz came over and gave the boys haircuts. They look so good. And she cut my wig! Now it looks much more like “real hair”. Well it is human hair. But now it looks like my hair. I love you Liz…you are so good to us.

I went to the mall with Shayna to get some things to wear in California. I found great things and it was all on sale. I was really lucking out. Then I found my way to Sephora. It is really overwhelming to walk into a beauty store when you feel less than beautiful. A male employee politely asked usif he could help me. I stammered for a second and said “No, I need a girl.” Sorry… I just could not do the I have breast cancer thing with him. He pointed me to the most attractive blond in the store and said, “Amy can help you.” Of course I thought can’t they hire ugly people? I explained to Amy that I was on chemo and that my eyebrows had fallen out. She and her associate Luna were immediately interested in my cancer and asked excellent questions..they asked how they would know they had it if it does not come in the form of a lump? We talked about IBC. Which always makes me feel like I have done my good deed in informing women. Amy was so sweet and showed me how to do my eyebrows with a kit they have. I looked so much more like “me”. I really appreciate pretty women who know how to make other women beautiful. We love Sephora.

So I will get onto a plane at 6:30 am with my fake hair, brows, and lashes…and try to look normal. Kelly’s grandmother will be picking me up from the airport in San Fransisco. From there I think Karen {Kelly’s mom} will be picking me up and we will drive to Southern California. Wednesday we will go to the clinic for my appointment at Epeius Biotechnologies. And then from what I heard it will be a long wait. I do not have much more information than that. But I will do my best to post while I am away.

The kids will be with friends for a few days at least until Thursday when they will be with Kelly. I am nervous and excited about getting into the trial. I was very unsure what to expect. I really hope all of you can pray for me. I know that no matter what the outcome I will fight. Today I feel like a fighter. I refuse to accept the “inevitability” of this. I feel very much that I need to be here for my children. And I know that know matter how difficult that road may be I have to go through this and come out the other end.

Shayna said today that she thinks it is hard for people to believe I am sick because I look good and smile a lot. We talked about the fact that my happiness does not revolve around my health or a specific outcome. We have to be ok with whatever is thrown our way. I think that is why cliche’s like “roll with the punches”..”life hands you lemons”.. exist. I don’t let my circumstances prevent me from enjoying life. Even if it is not the best day, its a day with my family and friends…so its excellent.

So California here I come..for the first time. And hopefully not the last. Pray for me. I love you all. Andrea