Punk Rock Mommy

As a kid I always made the worst choices in friends. I always picked the girl that would end up telling all my secrets to the entire class. I made friends with people that talked behind my back well into adulthood. I have always had friends that spoke to me cruel and unnecessary ways. I have always trusted the wrong people. I still make friends with people who are unkind to me. Whether they think they are “doing me a favor” by telling me some truth about my personality/marriage/life. Or they just do not treat me well in general. I have to question why I continue this pattern of unhealthy friendships at this point in my life.

Since my diagnosis I stopped being friends with some one who upon hearing of my diagnosis said “its not like you’re going to die.” I stopped speaking to someone who called me a “drama queen” when I was too sick to speak with him on the phone. He has since spent time continuing to harass me. He likes letting me know (on the blog) that he thinks badly of me. Last night I asked one of my friends why he had not been able to make it to the twins’ birthday. He had been promising to see them and us and then not showing up. He replied that he had been sick and unlike me he “did not have an army of people to do things for him.” I felt like I had been punched. How to even respond. It was cruel enough to keep me away for a long time to come.

I am pretty sure the people that know me well will say I am difficult to be friends with. I talk too much. I think I know everything. I give a lot but I expect a lot. And I think a few people would say I do not listen. There are good things about being friends with me. I am pretty nice and easy to be around. I think even with the cancer I still smile and laugh a lot. But yes I am not the easiest person to know. And I am actually very aware of my character defects. Which I am very desperate to change given my diagnosis. But sometimes these things that cut so deep they are difficult to ignore and move past. Maybe I hurt my friends too and I don’t know it. Maybe I am just really good at being a doormat.

But anymore I do not want to be one. Kelly told me I am not allowed to “fire” anymore of my friends. But I have a tendency to do this. I do not work things out with people. I just stop being friends with them. Its not about forgiveness. I can forgive them. But I do not want to continue to give people the opportunity to hurt me ever again. And for that reason I have no contact with anyone in my family except my mother. I pray all the time that God will help me forgive those who have hurt me. I pray that God will forgive me for hurting others.

Now the good thing is that there are a lot of people who are here for me. I have a lot of loving wonderful friends as well. Many of them can and do tell me the truth. Even the hard stuff. And I do not usually spend even one day in which I am alone or feel unloved. I have more close friends than most people. That small army are people I love and who I continue to have healthy happy relationships with. I still care about the lives of my friends. Even when they try to hide behind my cancer as a way to not talk about themselves I drag it out of them. I care about how my friends feel and what is happening to them. Nearly every day the people I love call me and come by. I am not letting the harsh words of others determine my self worth. Honestly, I feel blessed and fortunate in every regard. I do not care if people want to speak badly of me. I do not need to believe it. I can say that the friendships I have I treasure and enjoy. The relationships that are damaging and hurtful I can do without.

Truth without Love Kills, Love without Truth Lies

Ebehard Arnold

 

Last night we celebrated the twins’ 14th birthday. In our family we have a tradition that you can get whatever you want for dinner on the evening of your birthday. And a cake from whole foods. Which is better than anything I can bake. The twins wanted meatloaf, mashed potatoes, and steamed broccoli. I cooked during the day when Clay was taking a walk with my friend Ruthie. And our dear friend Eileen insisted on making them cake…well 2 cakes. Cakes that you could easily serve in a restaurant. It was very impressive. We had a nice gathering of friends over to partake in the sugary goodness. We sang, we ate, we played apples to apples. They were pleased to no end.

We did not get them anything yet. We asked everyone to pitch in for a best buy gift cards so that we can get them a laptop. They will need a computer of their own when they go to school next year. They were very content with that. And because we have so many kids we do not do a birthday party every year. The twins had a big one last year. It works out better this way. Its always somebody’s time to get the big party. This year it was Clay. Alec will get a graduation party. Jesse will be going with us to New York to see Spamalot on Broadway. I cherish all of this. I don’t care how many years I am here it will be a gift every time one of my children reaches a new milestone. For Clay it is his recent ability to walk and his emerging vocabulary. For the older kids it is a moving forward academically and getting older. It is all celebrated either in my heart or with little family celebrations. There is still so much to look forward to.

Tonight we went to a celebration of another kind. Our church has a big communal dinner 4 times a year. We do this when people chose to become covenant members or to be baptized. The kids and I will celebrated with the rest of the congregation. It is always a treat to spend time with so many people I adore. And to eat good food. I spent a lot of time in the nursery breaking up arguments among 4 year olds. This is mostly because anymore I get nervous in big groups. I never know who to talk to or what to say. I know this seems implausible but it is true nonetheless. I did however watch a lot of people become members of Circle and that was great. And it was very comforting to be among some of my favorite people. Even just siting next to them and not talking to them. So, Hi to all my favorite Circle peeps..you know who you are! I love you. Thanks for being awesome.

Thank you to everyone who gave me a bit of sympathy regarding the passing of my friend Rachel. We did not know each other very long but I adored her. About three years ago I lost my friend Sara to metastatic breast cancer as well. She too was in her late 30’s. While I was pregnant with Clay that Hall and Oates song ,Sara smiles, came on the radio. I cried so hard I had to pull over onto the side of the road. I missed her so much. And I miss Rachel now. Breast cancer scares me. Is it okay to say that? These two beautiful women are no longer here. It seems so weird when a young women dies fighting this dreaded disease. It all makes me so angry that we can’t/they can’t stop it. I just feel so uncomfortable. Why isn’t there a cure for cancer? I want to know.

People send me books about herbs that cure cancer. Or supplements. And then maybe the answer is in the raw food diet. Kristine thinks it is and she is in Florida finding out how to make her cancer disappear forever. I hope she’s right. I hope that’s it. Alaina fills my mind with tales of the new ways they are treating my disease. She tells me about bone marrow replacement and advances in therapies for our disease. I love these information sessions because they make me think I might live through this. Maybe I am living in a time in which a cure is near. A real cure. Not just the chemotherapy that keeps me alive. Alive indefinitely as long as I let them poison me. Go ahead poison me. Keep my cancer from spreading all over the place. I’m game. For now this is my best option. I am going with this until something better comes along. I’m sorry to everyone who desperately want me to take thousands of dollars worth of supplements I can’t afford. Sorry I am sticking with my Navelbine and Zometa.

Currently, it is what we have come to call my good week. It has been 10 days since my last chemo and I have a lot of energy. I cleaned my house, helped my daughter with her science project, and had a great deal of happy time with 15 month old Clayton. The good week is always good. I am trying to enjoy it. Usually I just end up over doing it. Which I certainly have done, as apparent via my very swollen arm. But in the end I would rather have a swollen arm than a dirty house. It is definitely a personality defect no doubt.

The good week is very short and very sweet. I plan to spend a lot of time fawning over my children and husband. Thursday will come far too soon.

On Tuesday my friend Rachel died. She was in hospice for 10 days. One day she was telling me her chemo wasn’t working, and literally 3 weeks later she died. It is heart breaking for her friends and family. Rachel had a small 1.5 cm. lump 2 years ago. She was supposed to be fine. But cancer is very tricky and scary stuff. Four months ago they found spots on her liver and the chemo regimen did nothing to stop the progression of her disease. Rachel was 37, beautiful, smart,funny,and kind. Her funeral was so sad. Very appropriate given the circumstances. I could not help thinking about what I would want at my funeral, and I definitely would want it to be a more joyous event. If that is even possible.

Rachel’s death is particularly painful for me because she was chemo buddy. Just like Kristine, who is now done treatment, Rachel and I were on the same chemo schedule and I got to see her every week and commiserate about our sucky symptoms…hair loss and nausea. It’s not that I can’t do that with my friends, its just comforting to do it with another survivor/endurer. It is also very obvious to me again that with this disease you just do not know from day to day what might happen next. You can not get too confident or too arrogant. Cancer seems to rear its ugly head whenever it damn well pleases. Me I am just thankful for each day. Tamara told me I was enlightened. I hope she meant it. I do really feel enlightened at least in this way. I feel very appreciative of every single day that I am here.

The car ride home with Kelly was a strange mix of conversations designed to distract us and those in which we talked about my funeral. This is inevitable. Even though I feel very positive and am encouraged by my current treatment…it seems like there is still a reason to discuss it. I sincerely hope that that is a long way in the future. I pray that the Lord has a plan for me that includes being here for many years to raise my children. But for a few minutes today Kelly and I talked about my death and how badly we would want my funeral to celebrate my life. No mourning for me.

Today was also a joyous day as well. I spent a lot of time with my husband. I felt compelled to ask him how he is doing and to listen to his honest answers. We talked and ate and shopped for good food and spent time with our children. This is living.Bring it on.

It is hard to look at myself in many of Jon’s photos. I have struggled with this from the beginning. Whether it was the reality of being captured grossly overweight and bald…or just capturing me with twisted expressions…it is not always easy to look at Jon’s photos. Other people may have a different response. I am glad to have them don’t misunderstand me. It’s just very humbling in some ways. I do not like my strange faces and the fact that I clearly use extensive hand gesturing when I speak. I look like I am speaking in bold strokes. It looks odd.

On the other hand I am glad to have these beautiful images of my children and family. I loved pictures of my forlorn Jesse. Pensive and brooding. I liked the images of the twins being playful and still apprehensive about being photographed. And Clay is so cute in many of the shots. I feel blessed to be able to look at these. I also know that to have a documented image of chemo may be good for someone else. What does a person on chemo look like? Prior to my diagnosis I was not even sure what chemotherapy was. And I had no idea that it was typically administered via a sub-dermal port placed in the chest.( awake, out patient with local anesthesia). In many ways, my desire to demystify cancer worked. I have tried to explain all the inner workings of chemo, surgery, and radiation. I think I do this in the hopes that it will be less frightening. For cancer patients and their loved ones. Who knows? I just felt compelled to share what was happening/what is happening in the belief that it would connect us. I did not want to be sick in isolation.

So I made my cancer public. I am on display emotionally and physically. In photos. In my own words on the blog. In the words of others in an article. It is a gift and a curse. And while I may feel critical about what I write and the images I see,  I imagine it is cathartic for us all.Daily I feel compelled  to post honestly about my life and health. And to note where I struggle, because we all struggle. I do not think one needs to experience this first hand to imagine the nature of the illness. And I think it many ways it has made me far more empathetic in general to what it means to be sick and well and to learn from tragedy.

My public cancer feels private sometimes when I do not write anything for several days. And at times, that feels good too. And even though many have commented on how good I look I still have cancer. I am still on chemo. I am still fat. This is what cancer looks like for me. I am not “green”, but I occasionally feel sea sick. I am tired but I still try to do everything. And I love Jon’s photos even the images that make me feel uncomfortable. None of this is really that comfortable anyway. That’s life though. Most of it is kind of uncomfortable. The weirdness of the new. And for me the strangeness of having public cancer but much of the time wanting to hide. But I don’t. Here is my cancer fat, bald, and with lipstick on. Here are my cancer words about acceptance, God, and love. This is what my cancer looks like.

 

No one really reads the blog on the weekends. Or at least that’s what I tell myself. Lately, I have not had a free minute to even think let alone contemplate anything. I have been with Clayton and the big kids. I have slept a lot. I do mean that. I slept for 4 hours after acupuncture on Friday. Most of the weekend I felt good, but kind of tired or weak. I did a lot with the kids and around the house. I made dinners and lunches. The big thing was going out on Friday night to punk rock karaoke. Kelly and I sipped cokes and watched the first set. It was pretty fun. We only stayed an hour or so. I was feeling tired.

It is interesting though that every time I go out my friends comment on “how good I look”. I still have cancer. I am still on chemo. But I guess my desire to be girly and look girly, even with my 12 year old boy chest, trumps being poisoned girl. I paint my nails. I style my inch and a quarter of hair. I actually got my eyebrows waxed last week. So I have cancer but I still want to look good. Kelly said that I am starting to look too good and people will stop holding benefits for us because I do not look sick enough. When I was on the evil chemo and I gained 50lbs. and was bald people still would say I looked good. Of course I usually had on make up and fake eyelashes, etc. Shayna said it was hard to believe that I was sick because I still looked good. This is an interesting phenomenon. Cancer= looking emaciated and green. I just can’t do it. I can’t give in to the chemo. When I leave the house i still want to look like me.

It has been so great to watch my hair grow in and eyebrows and lashes. And to lose the weight from the steroids. I look like me when I look in the mirror. So on the outside I no longer look like a cancer patient. Which is major. I feel like I can stroll through the mall or target and not get glances of sympathy from fellow shoppers. My cancer is now on the inside. Invisible to the outside world. I remember writing in a blog over the summer how much I hated people “knowing” I was sick by looking at me. It feels good to be able to hide.

I think the fact that I can look good conflicts with the fact that I do not always feel good. Sometimes it is hard for me to accept limitations. I tire quickly. My left arm swells when I do too much lifting. I suffer from chronic fatigue. My stomach is often in a state of upset. I am always thirsty and am frequently nauseous. When I spend the day with Clay I often feel wiped out. Maybe this just goes without saying when you have a toddler…or maybe I am dealing with the effects of chemo. Sometimes I say to myself “What’s wrong with me?” I forget that I am still in treatment. I forget that the treatment makes me sick and tired. Because for the most part…I look like me so I think I should feel like me.

Anyone who knew me before could probaly vouch for the fact that I could go and go and go. I was always busy. I could get up early and cook, clean, go to school. run errands, and do it all. Now just the thought of cleaning is often daunting. I feel inadequate. But I do appreciate what energy and vitality I do have. Honestly, it goes back to quality of life. The chemo keeps me alive. And I feel tired throughout the weekend. It gets better it gets worse. Whatever. I am still here for my family even if I can not do as much as I once could. It could be worse. A lot worse.

 

I had chemo yesterday. Afterward Kelly and I got some lunch and headed to the video store. I was planning a long quiet evening in bed with maybe a few episodes of scrubs on video. I feel into a deep sleep very soon after getting home. A nausea was present but not nearly as bad as weeks ago. I ate some cheese and crackers throughout the night. The family enjoyed a red lentil stew that Jenna brought over. Thank you Jenna. At different points through the night my kids came in the room and laid on the bed with me. Quiet and unobtrusive. Just laying there. I took some medicine as the night wore on but it was a manageable evening and actually nice in some ways. Chemo day means a little hush around the house. But they do not avoid me anymore like they did when I was on the bad chemo. I played with Tucker’s hair while we watched a cooking/travel show called No reservations. We both were very into New Zealand. All the food looked delicious but it was about this time that I needed more medicine.

My “sugar” counts have been very high every week. Dr. Demichele wants me to see an endocrinologist and get on some medicine to bring it down. It is not “diabetes” . I do not know any details other than my sugar is high. They said that the thirst that I have is part of the symptoms. I drink 2 gallons of water every day. I also have to pee all day long as a result. Day and night. That is why I am also very tired. I need to find a new internist/primary care doctor. My old one and I have to sever ties. I was pretty unhappy with her lack of knowledge regarding my cancer. Kelly says its not her fault nobody knows about IBC.

Nobody in La leche league ever mentioned it when we talked about breast infections. No lactation consultant or midwife ever gave me an indication that there was a cancer that mimicked the signs of a breast infection. To the contrary most if not all of the hundreds of discussions about breast infections indicated that many times they could be resolved without medical treatment. Try this. Try that. Then see the doctor for antibiotics. That’s what I did. Then weeks later I went on them again. Then I asked for an ultrasound to rule out a staph infection. Something I read about online while trying to diagnose myself.

But this is in the past. Maybe some day more people will know about IBC and pass the information on to women. No lump just pain and swelling can still be cancer. So I am on a mission to find a new doctor at University of Penn. who will work with me and send me to the endocrinologist, who will give me a pill and a diet plan no doubt to make my sugar counts normal. Oh joy.

I am still losing weight by the way. 6 lbs. last week. I am also exercising more and more. At physical therapy primarily, but it feels really good. And today is acupuncture which does not always feel good at first but has some lovely after effects. I feel very confident that this is a good routine. I feel positive about my care, my chemo, and my ability to spend some of week feeling a bit sick and most of it feeling well enough to get some things done. I am still not able to do it all. But this is the best I can do so far. Progress.

 

Today a couple letters from R.I.T arrived. They informed us that Alec will be getting $12,000 per year in scholarships solely based on his academic performance. It costs about $32,000 a year to go there with dorm fees and food. This is wonderful because Alec is still eligible for other grants and scholarships to further reduce the cost of tuition. Again the good things keep happening. I am so proud of my kids and these accomplishments. I hope it is not an ego thing. I do not want to take credit for these things. I think this is just a blessing from God that my kids are on their way to achieving wonderful goals. It all sets my heart to rest. I t helps me feel unburdened about the future.

Today i also found out that a friend who has been battling cancer has decided to enter hospice care. She was not responding to chemotherapy, and many other things. It is so heart breaking because she was a stage 2 lumpectomy person 2 years ago. And her cancer came back with a vengeance. I feel like it is harder for her than me. I think we would assume that she would be fine and healthy for a long time. In my case they presumed I was going to die and not have any kind of remission. It is easier to think I’m going t o die and be pleasantly surprised. It is a different matter to be told you will live and find out 2 years later you will not. This is the sick crazy hard world of cancer. It is a game of roulette…Russian roulette. Bad betting odds for most of us.

Today was a long day filled with more company and visits than I had planned but I was thrilled to have. Alys came by and we had lunch. My mom was here too. They both helped me around the house. Abbie came by with Darby and they stayed for dinner..which I made. Alec’s girlfriend Ashley has been eating dinner here every night as well. I also went to physical therapy, did the food shopping, and cleaned out the fridge.

Tomorrow is chemo. And I am filled with trepidation. I expect to feel awful. I hope I do not. And I know that I felt pretty darn good after acupuncture. All of this runs through my mind. In the end I need to pray to calm my anxiety about the nausea. Big deep breaths. I am in this for the long haul. My oncologist will probaly keep on this chemo for the next year. I can’t get stressed every Wednesday night about it. One day at a time. I am thankful it is working.

Thanks to everyone who has commented and who is praying for me. It means a lot to me to know so many care. I know that it strengthens my spirit. God bless you all.