Punk Rock Mommy

Kelly and I went to chemo yesterday. I wanted to wait and see how I felt to blog about it. Well so far I feel fine. A tad tired. Not at all sick. Dr. Demichelle said I should expect it to be hard on my white blood cell count. And I will for sure be”bound up” if you know what I mean. I plan on continuing acupuncture so Ed is going to help me with that. 10-20% of patients experience hair loss/thinning. I really hope to keep mine. I really like it. Being bald was an interesting experience but I think I am over it.

I will get Navelbine on a weekly basis. I will get zometa once a month. Zometa will fill in the holes in my bones and therefore reduce my need for pain medication. I am also seeing a therapist in the breast cancer center once a week. He thinks I am funny. And I am going to physical therapy for lymphedema. So my dance card is still full. Having cancer really is a full time job. I am going to get ct scans roughly every three months during treatment to assess where things are. As long as everything is working I will stay on navelbine for a long period of time. There are people who have been on it for years. If this chemo fails to work for any reason we will regroup and try a few other things. I need to mention that is very important that you do not visit me if you have a cold or may have been exposed to anything, this goes for children as well. I will have a depressed immune system while on navelbine. I am going to rely on you to let me know that you have a cough,sneeze, or tickle in your throat. I am telling you now because any illness can land me in the hospital.

Despite the immune system suppression navelbine is a good drug. It is less harsh than other chemo. I pray that we have one that will be able to halt the progression of my cancer. My body is like a game of pac man. Eating little holes in my bones. This has to stop. I am very happy though with all the care I receive . I am very confident that my oncologist wants exactly what I do.I am being well cared for. And my dear Dr, Demichelle wants to be aggressive as well.

I feel strong and prepared for this battle. I guess as strong as I can. I am still weak and sore from all that I have already been through. But still I know this is a less intense chemo and I can handle it. Acupuncture aided me a lot last time and I expect that it will help again. I also think that Reiki has helped me a great deal. So I have a few tricks up my sleeve to help me feel good.

And I also realize we will need to be aware that a time may come where this chemo regimen may fail. I am not exactly hopeful right now. I will try to be though for your sake. I am not a pessimist either. I just keep praying for God’s will. So today I am feeling well. Tired but happy.  I love you. Andrea

by Michael Persico
and Alli Katz

Kelly St. Smith
Body Graphics, 908 Arch St. 215.922.1313

“You know how people like to say they’re not your grandfather’s tattooer? I want to be your grandfather’s tattooer. Old tattoos may not always be pretty, but nine times out of 10 you can tell what they were 50 years later. I’ve done a lot of black and pink nautical stars as a benefit for my wife. She has stage-four inflammatory breast cancer. She calls it the punk-rock pink ribbon. I even put pink stars on the cuffs of a claddagh for my pastor. One of our friends didn’t want to get the star but wanted to show support, so he got a tattoo of a set of breasts that look like they’re cut off the body with a knife going through the cleavage. And a wing. When it’s slow I try to do as many small paintings as I can—we’re having a tattoo art auction and Girls Punk Rock Carnival at the Barbary for my wife. All sorts of people have come out to help. The tattoo community in Philly is incredible.”

Kelly was interviewed in the Philly Weekly. We could not be more pleased. What a great picture and story. I had to publish it. My husband works most Mondays, Tuesdays and Wednesdays at Arch Street Body Graphics. He has also worked a few shifts at South Street and 4th Street as well. If you would like to reach him try 215-806-9540. He takes appointments for weekends as well. I know a few of you have been interested in getting some work done ( Lindsay, Jes, others) Feel free to call him. Now is a great time of year to get tattooed. Business is slower and he has more time. And it supports our family . So since the body is the temple of the Holy Spirit…go ahead and decorate yours. Praise God. I love you all.

I have gotten a lot of phone calls in the last couple of days. I realize that I dropped a bomb so to speak in informing everyone of my recurrence in this format. It is just easier this way. Right now I am trying to be realistic about the situation. It is possible that the new chemo regimen will work. But then again it may not. My disease is very aggressive but we have known that from the very beginning. I am not “dying”. I am living with a terminal illness that eventually I will die from. Understanding the difference is important. You do not need to feel like I am slipping away just yet. I promise when the time comes I will be open and honest about that too. For now let’s assume there are a few more things the doctors can try to halt the progression of my disease. And I may get some extra time out of it.

In the meantime understand this, I will be getting weekly chemo for an indefinite period of time. I may or may not be up to visitors but please call me or email me and I will let you know. Please also be aware that I have shoulder and neck pain and long phone conversations can be physically difficult for me. I will do my very best though. I do need you all to stay in touch. It means a lot to me.

As far as helping me. Right now we still have meals coming every other day. If anything changes I will let people know. As far as child care we are covered. Jen watches him on Mondays and his nanny Jenny Ball is with him the rest of the week. Both of them are loving and kind. Excellent care givers. As of now Kelly and I are relying on Philly car share for my chemo appointments. I think Kelly should come with me because he missed out on that last time. Additional appointments for physical therapy and testing do come up on a weekly basis and I will be asking for rides from time to time. I have applied for several grants to offset the cost of childcare. It is a tough time of year for tattooing. We are doing the best we can and we are getting help through the fund raisers as well as Kelly’s mom and Dad. I do not feel alone or abandoned in any way. In fact I feel totally cared for and it is very moving. I have a lot of you who help with that and I am grateful. I feel really blessed in this way. Thank you all so much for caring for our family.

When my mind turns to the what ifs I get afraid that my family will not do as well without me. Kelly echoes this concern sometimes too. We fear that everyone will disappear in my absence. I pray that that is not the case.I think they will need you more if I do not make it. But today I do not want to dwell on that. I bring my mind back to the Lord and remind myself He has never forsaken me. Even now I know that His plan is perfect. His provision sufficient. And my life is truly in His hands. I am trying to be patient and accepting of my situation. One day at a time. Today I am alive. Albeit in some pain. But I am able to enjoy my children my loved ones and friends. Don’t pity me today.

Over the weekend I started to have more and more muscle soreness. By Sunday morning I could not turn my head without there being a great deal of pain. I was literally holding my head and trying not to move. In hospital terms my pain was a 10. I was overwhelmed by it. And the pain meds were not helping. I called Tamara ( she’s a nurse) and she said go to the hospital. She took me to HUP. They took me back right away. And they gave me meds pretty quickly. They also gave me a ct scan not long after I got there.

After some pain medicine through my port and my pain dropped to a zero. It was my first pain free moment in weeks. So we just waited for the scan results. Tamara and I talked about parenting. We talked about our teenagers. We laughed. But my light hearted pain free moment was short lived.

The ER doctor came in and told me that the scan found lesions on my t1 and t2 vertebrae. These were new. And likely the cause of my pain. There are 2cm. holes in the vertebrae at the base of my neck. No wonder the massage and heating pads did not work. So my cancer is spreading. This is considered a recurrence. I hoped that there would be a nice long time after treatment in which I would have a “break” but no such luck. So since my last chemo on September 12th and my last scan on the 10th of October my cancer has spread.

I left the hospital with prescriptions and an impending sense of doom. This is bad I kept saying. I am going to die. I really wanted to be here longer. Tamara rode the waves of grief with me. Then they turned to morbid jokes. “You can have my clothes.” “Oh good you are a stylish dresser”, she said. “At my funeral I want you to read a letter from me”, I told her. “It’s going to start…I told you I was going to die.” This is funny to me. I take deep breaths all the way home.

I told Kelly and the kids in a matter of fact way my cancer is spreading. I keep thinking please don’t go the brain. Please stay away from spinal fluid. Please let me live a little longer. I called my friend Alaina. She has IBC too and she helps me with the medical ins and outs of cancer. I read my ct scan report to her and she gives me her advice. I listen intently and I feel better…more hopeful. Alaina went through the same thing. She was diagnosed with metastatic disease 4 years ago. I trust her opinion.

This morning I went to see Dr. DeMichele with Cindy. I was also supposed to go to radiation later in the day. I waited for a while and then made my way back to see my oncologist. First we talk about my pain. Where it is what it’s been like. Then we talk about my situation. I asked her to put me on Zometa and Navelbine ( Alaina’s suggestion) and she agreed. At first we weren’t sure whether I should continue getting radiation. After calling Dr. Solin they decided no more radiation for me. I will start chemo at HUP on Thursday. I will get it once a week for and indefinite period of time.

So I am going to change everything. No more rides to radiation. I want Kelly to go with me to chemo so I will just get a Philly car share and see what happens. I am on a lot of medication for the pain in my bones. I am back to one day at a time. I feel shaken by this but well…it was always a possibility. People with stage 4 die of cancer. I just want to live with it as long as possible.

 

I hope that everyone had a wonderful Thanksgiving. I took a break from writing so that I could spend some good time with the family. I really like Thanksgiving. Its like Christmas without the presents. And even though I enjoy presents the commercial gift giving is less appealing than the the getting together with family and eating part of it.

We went to Clarence and Lhianna’s house. They invited us (8) and allowed us to bring 6 other guests with us. (girlfriends of the boys plus Ori, Kristin, and Tavi). So Lhianna is a saint. She cooked for two days and everything was from scratch. All I had to do was a pecan pie and a ham. Everything at Clarence and Lhianna’s house is warm and inviting. It is easy to feel comfortable and at home. We played a game with 14 people after dinner.It was a good time albeit loud.

I was so thankful for all my friends and family. I was thankful that the radiation has not made me unable to swallow or too sore or tired to enjoy my family. And I was thankful that I did not have to cook for two days. We had a wonderful time hanging out together. It was interesting to see both my teenage sons with their girlfriends. Parents be warned…they do not stay little for long. It may seem like it will last forever but if you blink they will be teenagers. Really.

I am very happy about the upcoming Christmas. I do not feel it as a commercialized responsibility or burden of gift giving. Rather I am quite pleased with the idea of letting my loved ones know they are loved. And presenting them with tokens of my affection. This time of year can fill us with anxiety. Right now nothing could make me more relaxed than the idea of quality time with the family.

Over the years we have developed some pretty sweet traditions around the holidays. I think in the attempt to avoid the lure of the mall and credit card circus that Christmas can become. We have the kids do a Pollyanna for one parent and one sibling. They usually shop together and manage to buy simple things that are”perfect’ for their pollyanna. It is very impressive. They don’t go to the mall. Just go to South Street and go to a few stores that are owned by friends of ours. It makes me happy to avoid the hype.

My own gifts this year were primarily books and handmade goodies from artisans. I mentioned they are occupying the drawer in my room. It feels good to be done with it already. I think too that having limited resources is a strong motivator to just get the kids the things they need or just will really enjoy. Maybe things would be different if I had a lot of money. Maybe not.

What I think the kids really enjoy is the time with us. The time we spend sitting around making jokes and eating. Playing games and laughing together. We have a birthday cake for Jesus every Christmas day. I think it helps us keep it all in perspective. I am looking forward to Christmas. I am looking forward to having them home for a week or two. I am looking forward to the games. And all the people dropping by. I hope the friends that have been swamped with work and school will have time to breath and stop by.

Today most of my children are home. And my plan is to make them eat leftovers and hang out with me. Well and maybe clean a bedroom or two. I hope you all had a sweet and wonderful holiday. And I hope that the Christmas season is a joyous one. God Bless you all.

Una Vida Mejor. In Spanish it means “a better life”. The phrase resonated so deeply in me that I had it tattooed on my body. To me it meant that my future was bright. That I was anticipating years of joy. I had it tattooed on me after I met Kelly. As I was nearing the end of my college years. I was on the verge of being fulfilled. I had set goals for myself that were coming to fruition. My children were all doing well. My ex- husband was sober. I attended church regularly. I was sunny and optimistic. That was 4 years ago.

A better life from the one I had had growing up. Or the one I had had when I was in my 20’s. And I am not one to sit around and dwell on the past or portray myself as a victim, I merely recognized that I was entering into a better life. I looked at those words on my arm today. They are written on my left arm which is swollen with edema. They are stretched out and distorted. My better life has become odd, twisted, and unrecognizable from how it once looked.

Being diagnosed with cancer that is terminal has made me rethink and retool what I once used to define a better life. My life does not include growing old, a better life must take place in the here and now. Only what I can attain today not what I hope for tomorrow. My better life can not include one without illness or medical intervention for if it did I would be very disappointed. My better life today is not the one I had planned but it is still very good. I finished college. And although I never got to “use” my degree it helped me become a more intelligent and articulate person. And I married Kelly. The man that shown so brightly in my life 4 years ago. He still shines brightly although sometimes I want to punch his lights out. He is still part of my better life. As is Clay. A better thing I did not know I wanted or needed until he was here. And my children are all healthy and relatively well adjusted. They are smart and kind with a good sense of humor. They make my life better everyday. And Tony is still sober and that makes all our lives better.

And though it is hard to explain my life is better than I ever thought it would be. Albeit shorter. And while there are times when I walk in sadness most of the time I am still very joyful about my life. In the here and now it is good. I am surrounded by more friendship, love, compassion, and understanding than any I have known throughout my life. And I know that this path, this life, just as it is, is perfect. It is not the better life I wanted it is the one God gave me.

Radiation continued all week. And for me it really did not get easier or better. I took pain medication to handle the pain in my neck and shoulder but it did very little. I also got acupuncture. Ed came to my house and put needles in my ear, leg, and back. It helped my overall mood and disposition. But a lot of the pain persisted. Then Tamara came over and did reiki on me. I felt the huge area of pain shrink down to a “manageable” size. I was filled with anxiety she said. And even though most people feel nothing in the early weeks of radiation I am noticeably nauseous. I feel sick during radiation which I have attributed to the medical smells and the pain in my neck and shoulder. But I can not say why I feel so sick now. Like I mentioned it is said that radiation has little side effects in the early weeks. So either I am super sensitive to it or I am a hypochondriac. Whichever.

In the meantime I do feel yucky and tired. I really need a good massage. I have been making all the kids do it but they are nearly over that and I think they are doing a bad job on purpose so I will stop asking them to rub my shoulders. I have thought about getting a real massage but I can not yet lay on my stomach and I skeeve people touching me that I do not know. Really freaks me out. And I do not like strange men touching me more than strange women. And all these people who can just get naked and let people touch you..good for you. Not me. Totally gives me a bad one. So I am complaining about the pain but I am not sure what to do about it.

Tamara gave me a relaxation tape to listen to during radiation. But the player they have wouldn’t read the cd. So for five days in a row I listened to the best of Frank Sinatra. The lady is a tramp makes no sense to me. He sings about this girl that doesn’t gossip or do cocaine…why is she a tramp? This is what runs through my mind will they zap my cancer . That and .. “damn I can not take this pain in my shoulder I am going to die or pass out.” And sometimes I wonder if all this radiation from the tests and this are going to give me more cancer. It seems like everything they use to identify and treat cancer should cause cancer. You know? So this is what I think about for an hour a day. Sometimes I think I wish they would stop drawing all over me with a sharpie marker.

Sometimes I pray. Desperate pleading prayers to God to heal me. In radiation I rarely feel the Lord’s comfort or peace. In fact the entire hour is totally unpleasant and unnerving. Other people seem happy and relaxed as they come and go in 8 minutes. I tell them every day..I hate this. I liked chemo better. I don’t know exactly why this is so hard for me. It is hard to spend two hours a day at the hospital. I thought I would be in and out. But I am there a long time. And I don’t like thinking about my cancer all day. But that is what I do.There is no time for me to “forget”.

I think it is so funny that everyone tells me I am strong. I am so not strong. And I have so much love and support and help it easy to get through this. If you go back and read what I have written from the beginning it is clear that chemo was hard and I cried and complained. The same is true of my surgery and now radiation. I have managed to keep my spirits up because of my friends and my children. I still find some joy in the day due to loving people who are all around me. But I have not been strong. All this has taken a huge toll on me physically. And emotionally. I don’t know that I am really the same person I was before. Maybe in some ways. But in many ways no. For now I feel like a very lucky weak person who has a strong support system. I love you all.

When I arrived for my first radiation appointment the supervisor met with me and told me that they would not be able to accommodate my “no men” policy. She and the social worker spent the better part of an hour explaining, pleading, and reassuring me. I cried . I did not want any men in the room. In the end they won. Men will be in the room..but they will not touch me. And whenever possible I will be covered. I felt worn down. It was just a simple fact that men outnumber the women and I had to go along with the program. I had to play nice. They suggested I see a therapist for my issues.

As I entered the room the radio was playing I’ve got you under my skin by Sinatra. I thought it ironic and let it lighten my somber mood. Again the procedure was painful. I have to hold a bar over my head with my neck cocked at an angle. The discomfort does quite a number on my muscles. And I was finding it pretty difficult. I took a pain pill before I left but it wore off before radiation started.

The actual radiation is colorless,odorless, and void of sensation. I really had no idea where the actual radiation was coming from. There are green lights that bounce off the walls. And there is a light in which they slide grids that need to match up all my tattoos. Again they drew all over me. Mimi asked me not to wash the marks off. It is demeaning…embarrassing. I would rather be tattooed.

In addition to the normal radiation ,every other day, they lay a gel- like mat on top of me that allows the radiation to go more to the surface. Typically, they do not want to do this because it increases the likelihood of scarring and burning the skin. In my case it is necessary because I did not get clear margins at the time of my mastectomy. { clear margins– this means that when they did the surgery they went beyond the involved area in the hope that they would find the tissue to be clear of cancer cells. In my case they found involvement beyond the area they took. When this occurs cancer cells left on the surface can cause skin involvement also called skin metastasis}

Once a week they will also give me an extra bolus to the neck. And at the midpoint they do a treatment with electrons that feel like needles pricking me during the treatment. I know that all this radiation will hopefully prevent me from getting skin mets and a recurrence in the area. Hopefully, it will also shrink/eradicate the tumor in my neck and clavicle. When the treatment was over I felt like I was going to be sick. I think its from laying there with my arms up over my head. It is not too painful but its kind of draining emotionally. I really am not looking forward to tomorrow. One down 44 to go.

On another note, a woman who works for me told her mom about your blog/cancer and she told her friend who realized she had never done a self breast exam….. Well, she did one, found a lump, it was cancer (little-lump-cancer) and she’s having it removed. Anyway, thanks to you, the word is getting out there and you are raising awareness and helping women to seek help. Who knows how long this woman would have gone or what the final straw would have been to get her to the doctor. Thank you for being you and positively affecting the world.

Love, Amy

I thought the idea of doing a blog was silly. In all honesty my initial weeks of writing this stuff down was so that people would stop calling me. But when I read this today I cried. I have said from the beginning that I believe that God has a plan. That maybe this plan includes me living maybe not.But that is not the point…the point is that this experience is changing me and everyone I know. We are all learning how to navigate the waters of medicine and procedures. I share these things so my loved ones will understand what is happening to me.I also have hoped from the beginning that it would encourage other women to pay attention to their bodies.To be aware of symptoms and changes in their breasts. And not to ignore pain or lumps. I often wish that I had been told about IBC when I was a nursing mom.

But I was talking about God’s plan. And so here is an example of the plan. I write a blog and people talk about it and a woman has been spared stage 4 cancer ( hopefully). That’s good stuff. Honestly, I do not always feel positive about God “using” me in this way, but I know it is how it is supposed to be. I wish sometimes that He could have chosen someone else but at the end of the day I know that it just was supposed to be me. I know a lot of people. I am outspoken. I guess that’s why its me.

Sometimes it is hard to say these things out loud or write them down for others to read. I may sound like a zealot. These are my beliefs. I am very comforted by the idea of God using us to work in each other’s lives. I believe there is a reason for everything. And I believe that we are not meant to cling to this life. I am not afraid of what is happening inside my body. I will either respond to treatment or not. I am sometimes afraid of the pain the treatments cause me. But I am not in fear of whether I live or die. Because my future is set.I honestly feel that there is a reason for all of this to be happening. Today the reason is that Amy’s friends’ mom checked her breasts and found a lump…that’s a good enough plan for me.