Punk Rock Mommy

 Karen left this morning. I miss her already. She was so helpful in making everything go smoothly after my surgery. I wish she and Bill lived closer. They are so wonderful. I was really blessed by her presence. I love you Karen.

Cindy took me to see the surgeon today. He entered the room minutes after we got there. I was so stunned by his punctuality that I was rendered speechless. “Why am I here? Ugh…the nurse she said come in.I have pain.” I sounded like an idiot. He pressed all over my incision and commented that fluid was building up in there and he was going to DRAIN IT! In the office. He got a couple needles, tubing, and what looked like mason jars and sucked the excess fluids out of my chest. I thought Cindy was going to puke in her lap. He commented that it looked like beer. Gross. I will likely never drink beer again.

It is Halloween. Bailey is trick or treating with Tavi. The twins are with friends. My older boys are doing homework and intermittently passing out candy to the neighborhood children. It is quiet around the house. For better or worse.

As I sat down to write I realized on this day last year I was in the hospital with Clayton. He was having some medical problems after he was born and we spent 5 days in Jefferson Hospital. It has been a rough year. Clay’s difficult pregnancy/birth/newborn period was followed by his refusal to breastfeed after he was 5 months old. And by then of course I had cancer and did not know it. I have cried and prayed my way through this year. Cancer ravaged my body. Cancer has stolen away my precious time with my baby and children. I have been a crisis mode for a year.

Some hard times are ahead of me as well. While radiation can be rather easy for many, my radiation will include my neck since I still have a tumor there. When the neck is radiated it often burns the throat making it difficult and painful to swallow. Usually after two weeks on radiation patients report a number of symptoms that may require pain medicine and drinking lydocane to diminish them. In rare cases people need IV fluids or hospitalization. Dramatic weight loss is a common side effect. I will be undergoing radiation for 7weeks. I am afraid. I feel like this is a huge challenge both physically and emotionally. I grew accustomed to the feel bad feel good cycle of chemotherapy. I looked forward to the good days. Radiation is every day, 5 days a week, for 7 weeks. No time off for good behavior. Not that I am likely to exhibit any good behavior.

I keep trying to do one day at a time. I am really focused on the past and the present lately. Look I have endured all this….and I still have so far to go….this will never be over. And that is true to an extent. This is a long road. I expect that a year or so after ending this series of treatments my cancer will spread from my sternum to some other place in my body…liver, lungs, brain. That’s how cancer rolls. But I have to try to not spend my time living through these treatments of tomorrow. It is really enough of a burden to get through the ones I have today.

Today is Tuesday. I am still quite sore but I am doing better. I am terrified at the thought of Karen leaving. She has been managing my whole household. A big job. She has done the shopping, cooking, and caring for Clay. And I am still so unable to do any of this. I made a salad yesterday. I went to Kohl’s with Rob and Tucker. Tucker needed a suit jacket, dress shirt, and dress shoes. The twins are shadowing at Saint Joe’s Prep tomorrow. We are so excited. I had to take pain medication to leave the house. It was so hot in Kohl’s that I took my hat off and walked around with my 1/2 inch of hair. I felt so exposed and alien. My boobless, hairless, self. I am certain people know I have had a mastectomy. I want to be invisible.

I have been thinking a lot about what cancer has given me and what it has taken away. It is hard to express some of it. It has taken away the obvious things..my health, my breasts, my ovaries, some of my friends, my ability to grow old. It has taken away my sense of a future with my loved ones. It has taken away my reliance on myself. It has taken away my desire to find self worth in my appearance. It has taken away time that I could spend with my family. It has taken all my energy to make it through a day with the pain.

It has given me things too. It has given me a powerful love of living in the day. It has given me an ability to be comforted by the Lord in my times of sorrow. Cancer has given me a reason to focus on God’s grace and forgiveness. Cancer has helped me to focus my attention on my loved ones whenever I am able. It has taught me that things that I used to think were important were actually superficial. God has walked me through this. But my friends have been holding my hands too. They have loved me and helped me all along this journey. Some people have retreated during this time of trial. Cancer has taught me that no matter how much we expect it or wish it people are not always who we want them to be. It has given me a real sense of walking with the spirit. It has given me an understanding of the beatitudes. It has given me insight and compassion for what it means to suffer and still have hope.

I struggle. And I am also at times at peace. Lately, I have endured a lot of physical pain. And pleaded with the Lord to diminish it. Much of the pain was physical but much of it was emotional too. When I first saw my body after the surgery I wished I was dead. I bawled for an hour alone in my hospital room. I wished I had died in surgery. When I first came home I was in agony. I wanted to swallow the bottle of pain pills and go to sleep forever. I looked in the mirror and thought there was nothing to live for. I know that none of that is true. But in the moment I felt that my cancer had truly robbed me of anything I had had. I am gaining a new perspective. Throughout this ordeal I have felt God’s presence and He is teaching me about acceptance. Sometimes I think I have a lot to learn about being a Christian. Cancer is a hard way to learn. But it is teaching me many things. Painful lessons about what it means to suffer and be comforted by God.

Today I am suffering less than yesterday. I know God is here with me and that I need to accept my situation for what it is. I know that I will live as long as He wills it. I know that cancer can not take away my love for my friends and family. Cancer can not take away my faith. My dignity. Or my grace.

“Blessed are the poor in spirit,
for theirs is the kingdom of heaven.

Blessed are they who mourn,
for they shall be comforted.

Blessed are the meek,
for they shall inherit the earth.

Blessed are they who hunger and thirst for righteousness,
for they shall be satisfied.

Blessed are the merciful,
for they shall obtain mercy.

Blessed are the pure of heart,
for they shall see God.

Blessed are the peacemakers,
for they shall be called children of God.

Blessed are they who are persecuted for the sake of righteousness,
for theirs is the kingdom of heaven.”
Gospel of Matthew 5:3-10

When I am unhappy I always find writing far more daunting. I want to show the world that I am strong. And this has left me feeling quite weak. I expected to be up and around…it has been three weeks. But I am still sick and sore and swollen. Parts of me are so filled with fluid that they ache. The lympedema in my arms makes them burn. I can not “reach” for things. And I am still totally incapable of caring for Clay. I have no stamina. He will push his head into my incision (chest) which at this point is still healing. I am not complaining. I just wish I could will myself to feel better. I have very little to say since I have been mostly laying in bed.

The physical therapists are like “get up and walk around the house”. But I don’t. My arms get very swollen when they are not elevated. So I am obsessed with keeping them up. I don’t know if I am depressed. I sleep a lot. I talk to the kids in my room. They hang out with me in there. So does Kelly. I have not done a thing other than the physical therapy exercises and a few doctor’s appointments. I still feel too tired to get up and do anything. I know that Clay is very happy and content to have Karen caring for him. He is very happy to have Grandma. She is amazing with him…taking him on several walks each day..playing all day with him. I have barely touched him since I got home. And my extended absences (California,surgery,hospitalization) have left him very aloof with me. He responds much more to other people. I think he is not sure who I am. I have been sick since he was 6 months old. And he has had Jenny, Kelly, and my older boys caring for him for much of that time. But at least with chemotherapy I had good weeks followed by bad. But it has been a while since I cared for Clay. It has been a very long time since I was alone with him. I have been weary of that for a long time since chemo also made me very tired. I am not sure what to think about any of this.

I can not afford to be upset about it since I am sick and this is just how things are. My instincts tell me he is happy and in good hands even if they are not my hands.Sometimes that is the lesson with cancer. It always seems to strike these young women who are like me. Women who are used to doing everything for themselves and taking care of other people. And then we get sick and do not know what to do. I have learned through this just how hard it is to let other people take care of my family for me. Other people cook , clean , and care for my family. And it is ok. My family are fed, my house is clean, and my children are fine. It is hard to say that..but it is true. That is a lesson. I can not do this by myself and I haven’t had to. Every time I turn around there are helping hands to get me through this. But it is still hard to accept that at times.

As much as I know I am needed here I also know that at this time there is little I can do other than be present. I wish I was up to long walks and some light housekeeping. I am not. I can barely make myself a bowl of cereal ( the gallon jug is too heavy to lift and the cereal to high up for me to reach). But I am here. Tired, swollen, and sore I am here. And that’s what counts. My children are resilient. Hopefully, my marriage will be too.

I had my drains removed today. And after I was no longer shackled to my lymph tissue I slipped into my sweatshirt and … zipped it up. I zipped it up past my non existent breasts. Zip straight up to the top. I have never been able to do that. I always had to stop half way and push and shift and struggle to get the zipper to go up over my boobs. Now it just went up. I thought it was funny and so did Ruthie. We laughed.

So awake I am handling this loss much better than in my sleep. Each night my dreams are filled with anxious searches in which I utter out loud “I feel like I am forgetting something”. I am constantly searching for things or forgetting things. I lose keys. I forget where I am. Sometimes I am frantic other times melancholy. Once I saw a box at the bedside table. I did not open it but I knew my “breasts” were in there. I was relieved to “find” them but then said they are not real. I have forgotten my children places in these dreams. I get lost in others. I awake exhausted and sad. My dreams are vivid. I feel like this is the process my unconscious mind is struggling with. Where did my body go? So I feel lost and disoriented as I dream about the amputation. I miss my breasts.

I miss them but I know that the surgery saved my life. I don’t miss my cancer breasts. I miss my healthy breasts. I am sad they got sick. I am sad they had to go. I do not want new ones. I just miss my old ones. No kind words extend to my dreams. This is about me and healing and change and acceptance. This is my story with my unconscious. I feel lost, alone, and confused….at least while I sleep.

But awake I find some of this interesting. Like you know that sensation when you are cold and nipples get erect? I get that feeling but I have no nipples. Kelly said I have phantom nipples. That’s hot. And I am not shuffling around saying poor me. I am mostly saying ok..this sucks…moving on. I pray a lot. I pray and cry. I pray and take deep breaths. Sometimes I laugh. I enjoy all the things I can. Today I enjoyed the company of my good friend Ruthie..who always makes me laugh. I enjoyed seeing Kelly at work. I enjoyed bumping into JoG..it was nice to see her smile. I realized that her boobs are now bigger than mine…so are Kelly’s. Oh well.

 

Wonderful people have been bringing meals for more than two weeks. It has been a real blessing to us. And quite a few of them have made brownies. In fact, we have had brownies at least half a dozen times. We love brownies. They are chewy and chocolate what’s not to love. But it made me wonder…why brownies? I think I came up with the happiness factor. Our family is sad. And brownies might make them happy…if only for the few moments they are being eaten. Or the anticipation of them. So people are not just making dinner they are all trying to make us happy. Sweet. Either  that or you read choclate cures cancer and forgot to tell me.

Sweet things. Asa entered an essay contest a few weeks ago. It was for the fancy candy shop in Liberties Walk. The children had to write a story about being trapped in a candy store. Asa won the contest. He will get a big basket of candy and his essay will be published in the Fishtown Spirit next Wednesday. He beemed with pride upon hearing the news. We beemed with him. Sweet.

Today is Clayton’s first birthday. It has been quite a year. I feel like I have been robbed of spending that unlimited time with him. I had to spend a lot of time at doctor’s appointments and chemo. But our time is sweet nonetheless. Karen is playing peekaboo with him. “Where’s Clayton?” “There he is!” He squeals with joy. One year olds are pretty easy that way. I pray for healing. My arms are too sore and swollen to hold Clay right now. I am still too weak to take care of him. And he head butted my incision the other day so I am a little scared of him. I know time heals all wounds. I am looking forward to being able to be a full time mommy again. Cancer is very inconvenient when it comes to parenting.

Rachel from lymphedivas  came over yesterday and gave me a black and a leopard compression sleeve for my arms. They are beautiful and functional. Thank you Rachel. And today the lymphedema specialists are coming over to help me. I hope that they can. I am very sore and swollen. I am thankful that my insurance company will pay for this.

My friend Amanda is throwing a huge Halloween bash for us at the Ruba club on Friday night. The party starts at 9pm. It is $5 to get in with a costume. The Purple Generals, Broken Prayers, and Hillside Wranglers will be playing. And there will a $100 prize to the biggest “Phreak” in Philly. Good times for everyone. I hope you all can come out and have some scary fun. Kelly really wants his friends there so Jenni Bender you have to go! And Heidi you too! I hope you all go and have a great time.

 

So today I had an appointment with the surprisingly cheerful Dr. Czernicki. He is usually all business. Today I got two drains removed and we discussed my case. He decided not to do the surgery because he seemed unconvinced that it would be more effective than radiation. So in the end that is huge relief. And it seems reasonable that I can start radiation in the next month. After I am healed. He also felt that regardless of the pathology I did have IBC in the right breast as well. So Aimee I think you do not need to go to medical school…your advice seems right on. Instead of an armchair quarterback Aimee is an armchair oncologist. 🙂

I will not be getting anymore chemotherapy at this point. This is due to the fact that my cancer was hormone driven and my oncologist feels very strongly that you need to resist the urge to throw chemo at a hormone cancer.

I meet with the radiation doctor tomorrow. And I will know more about this next phase of treatment soon. I am still dealing with severe swelling in my arm. The lymphedema specialists are coming to the house on Thursday to discuss compression garments with me. Oh goodie.

I read some comments that I had missed. Sorry Lin. Did “pity pot” really seem appropriate though? I was more angry than in need of a pot to cry in. I was really quite mad at the media’s decision to ignore stage 4 metastasized women when discussing survivors.There are a lot of women who are young and dealing with more than pea size lumps…but they do not dare speak of them in Marie Claire,Ms.,Cosmo,Jane, etc. The media focuses on happy curable cancer. Not ugly- disfiguring- palliative care cancer. It was really more the cultural ignorance of the cancer struggle for women with advanced disease that I was aiming my comments at. I am sorry you got caught in the cross fire. And Aimee thanks for your loving and understanding words.

So today aside from fatigue and being disgusted with the drains and swelling I am doing better. Still sad sometimes but not as intensely as I felt initially. I feel different. I miss my breasts. But I am looking forward to not having to wear a bra. Although I did ask for a prescription for boobies. Maybe I can wear them on special occasions.

I am not as melancholy as I was last week. Although I am still very flaky. I made plans with Megan for this morning and totally forgot about them. Which is very unfortunate since I love her and would have enjoyed a visit.

So that is my update until tomorrow. I will be posting some information about a Halloween event this Friday night at the Ruba club. This will be a benefit for our family. I hope you are all well. Much love, Andrea

I spent the better part of the morning preparing to exit my house. I felt like an alien in a strange world driving along in Tamara’s car. I wanted to hide. I was not at all interested in the prospect of talking to anyone. Agoraphobia, that is my self-diagnosed condition. Well…I do not really want anyone here either so I have a condition in which I no longer really want to be around people especially groups of people. Maybe I will get over it.Maybe not.

Today was the first of three with back to back appointments in which I am gaining a better understanding of what transpired at the surgery. So as best as I can explain it here are the results. So the good news is that the cancer did not involve the chest wall or muscles…I don’t think.I think that’s what she said. There were a few surprises.

1. Even though the doctor took an extensive mass from underneath my left arm the pathology claimed there were only 3 lymph nodes in that mass. All of which had cancer.

2. Despite a mammogram, 2 MRI’s,3 cat scans, and 2 petscans…..I had breast cancer on the right side as well. Specifically, an invasive ductal carcinoma with lymphovascular invasion. That’s right in case that slipped you by…it is not the same cancer. I had a different breast cancer on the other side. Lucky me I wanted to try them all. So it is a good thing that I pushed to take both breasts. I would be dead.

3. I may not be HER2+. Which means I do not require herceptin. They will review that part of the pathology again to make sure. It’s possible that parts of the tumors have/had different receptors that were either positive or negative. Its technical I guess.

The other thing is that I did not get clear margins so I will have to get more surgery before I am able to start radiation. I will know more about that tomorrow when I visit the surgeon. I do not know anything more than this so please do not bombard me with questions about the surgery. I will post about it though. Also, they took 18 lymph nodes out of my right arm and two had cancer. So that’s good I think. I am not looking forward to more surgery but I have been told that it will not be as invasive as the first one.

I am really at a loss. I guess I should be relieved or happy. I am upset that I can’t start radiation any time soon. Also it will be even longer before I am recovered from surgery. It is taking quite a toll on me. And I feel very hollow and distant from my baby and husband. All of which leaves me a bit depressed. Each day is a little better. But now just thinking about them cutting into me is a truly disturbing thought. I was upset by giving blood through my port today. I hate the smell of alcohol and anything medical. It turns my stomach.

Speaking of stomachs….I lost like 20lbs. Which is probaly the weight of my boobs and some water I was carrying around post chemo. I was saying how happy I was to be on these antibiotics that make me nauseous because I am not really eating. That upset Joann Hulnick{ patient advocate} so she is contacting the nutritionist for me. And a therapist as well. Maybe she can help me with my agoraphobia. Also a lymphedema specialist is coming to the house to help me with that as well.

OK. I am now officially sick of myself. You know everything. I love you all. Ciao.

Last week was very hard. Emotionally, physically, spiritually. It is always hard when we have to endure surgery and its aftermath. That goes for anyone. I was more upset that my arms hurt from being tied down at my sides for 9 hours then I was about other post operative pain. In any case, things are slowly getting better. My strength is coming back. I still take a few naps/rests throughout the day. I am still sore. But I would rather take a motrin than pain killer though. The dilaudid gave me wicked hangovers. So gradually things are improving. The kids still seem stressed and sad. I have not had much time to reassure them that everything will be ok. It is hard to do that when I do not even know myself if things will in fact be ok. My appointment with the oncologist should clarify things. That is tomorrow at 1pm. The pathology report is back and we should know a little more about what we are dealing with.

There are times when I think I do not want to have to keep fighting this battle. I know so so many women with IBC who have been dealing with this for 5-7-9 years and it is a life of surgery, chemo,radiation, and medicine. It is a war they never get to stop fighting. I get tired just thinking about it. This has been an exhausting 6 months. All those appointments and procedures. All those tests. Cancer is my full time job. I do more stuff about cancer than I do mom stuff. That is heart wrenching to me since I hate my cancer and I love being a mom.

My body is still in shock I think. Every part of me burns and aches. My muscles are crying for relief. Yet, the thought of anyone touching me is totally upsetting. Except Jesse and Kelly both of whom I have asked to rub my sore shoulders. I know that the emotional burden of disease and surgery are being carried around in my neck and back. I think I need to devote everything i have right now to healing. That is what Tamara said to me the other day. I just recite this ongoing mantra…”Lord be with me and heal my broken body.” I know that people are praying for me. I can feel it. I sometimes feel strengthened for “no reason”. Right now I am awake and sore. But happy to be able to interact with my family.

So I am just getting through this day by day. Realizing that is all I have. I do not have too many hopes and dreams for the future right now. The future seems very far away.