Punk Rock Mommy

In the last several weeks from various sources people have said to me, “I can’t/don’t read your blog anymore, it is too depressing.” I am not sure what to think about that. I go back to my original basis for writing it. I just wanted to inform my loved ones of what was happening with my treatment. It developed into what was happening with my children, my emotions, my adjustments to all the heaviness that is cancer. I went back and read some old entries. Some are very depressing. Mostly because it is a pretty intense thing to go through. But some of it is uplifting and positive. Ultimately, it is honest. And as sorry as I was to hear people can not bear to read my words…. too bad this is the truth. I have cancer, I am in treatment, and I am trying to live out each day despite that.Or maybe because of it.

My cancer life has become very routine. Today is acupuncture day. I crawl into the Won Institute and Ed greets me with warm smiles and questions that let me know he does read the blog. He questions me about my side effects. Today I was really queasy and my whole body ached. Every single needle hurt. Sometimes this is how it is for me. Ed is not a sadist so it makes him a bit sad to hear me scream. I once asked if he could numb my skin before placing the needles. He said,” It is not your skin that hurts. It is the needles contact with your Chi.” I have sore Chi. So some of the needles hurt more than others. Today the most painful one was my intestines. A needle placed in my abdomen. It hurt so much. In the end though I felt much better. Just tired. Another predictable side effect. Day two after acupuncture I sleep.

I slept through my friend Tabytha bringing our family a meal for two days in a row. Thank you Tabytha everything was wonderful. I slept through Bailey being picked up for bowling to be with friends from Circle. Thanks Circle girls! I slept through Clayton crying, dinnertime, and bedtime. Maybe tomorrow I will get to spend more time with the kids and Clay. If history is an indicator Saturdays are not too bad.

I have one lingering symptom that is this awful metallic taste in my mouth. I have been chewing gum to get rid of it. I have been craving sweet things to overpower it. I have had a couple of cola drinks. I know with my high sugar I should drink diet instead. And lent is not over. But I think my sick days from chemo are lent exempt. You gotta do what you gotta do.

So tonight may be filled with inactivity like watching television episodes on the computer. Or possibly a friend or two may visit. In my routine cancer world I have a few good days to look forward to. Most of the time I am a bit tired. I am even physically a bit weak. Sometimes I feel sad. But more often I am pretty darn happy to just be alive. This is my cancer life. It is not that scary or sad to me. I apologize to those of you who cry while you read this. I am not trying to break your heart.

 

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So my friend Julie nominated me for blog of the year, mommy blog category. Judging begins next month. I am very competitive. I like to win. And even though I down play the blog thing, it is kind of important to me that people like it. I don’t know what kind of following some of these other ones have…but well I think it would be cool. Although it is an honor just to be nominated.

I just got back from chemo. I lost 5 lbs. And they upped my dose. I think because of the pain. I need a ride to acupuncture tomorrow at 10 a.m. and I may need help with a ct scan I need. Jesse is in Liverpool and the other kids are on spring break. So I may need a little help juggling the kids and a scan since they sometimes take several hours. Give me a call if you can help out.

Today was a busy day. And though I am still feeling slow(really that best describes it) I had things to do. We picked up our new car. And now that I am really looking at it I realize it is a boat. A boat to carry my huge family. A tank to protect them from the dangers of psycho drivers. But this land yacht has me nervous. How am I going to parallel park this thing? Seriously. You folks outside the city don’t understand the stress of parallel parking whilst 20 cars are honking behind you. I am going to have a bit of trouble finding a place to park this thing. And when driving it one feels like they are in a spaceship it just flies down the rode in its own orbit. I feel a little weird about this. I mean I have had big cars before but this thing is huge. It will get like 8 miles to the gallon. I think I am in over my head.

After picking up the big blue I dropped Kelly off at work and headed to my younger kids school. Report card conference day. All my children have attended Meredith for K through 8th. It is an excellent public school that has prepared them all well for high school. All the teachers and staff know me and our family. When I arrived I mentioned that I was headed to the third floor. “Do you want the teachers to come down?”, they asked. “No no I will get up there”, I said. “It may take me a minute but I am here early.” I am so ridiculously out of shape that I huffed and puffed my way upstairs.

When I reached the third floor I saw more familiar faces.Many of the teachers have had several of my children. Some had all of them. I am sure it is hard not to make comparisons. But in our family the kids are pretty different about their approach to learning. For the most part they sailed through grade school. The twins have been honor roll students for all 8 years. Every single semester without exception. They are never a problem. I hear wonderful things from every teacher they have had. Its both embarrassing and humbling. It is really not my doing though the teachers think otherwise. The twins are really just amazing learners. I feel like their teachers did a way better job of cultivating that than I did. And Bailey is doing very well too. All the talkativeness and time management issues she struggled with last year are gone. She too is a consistent honor roll student. I feel blessed. I have had very little to do with their schoolwork this year. Other than to mutter “did you do your homework? Do you have any projects?” They are very independent with school. Another blessing. One less thing to worry about. And I do like to worry.

We got the tags for the car and went to lunch. Since I left my stomach has been in knots. I think a burger may have been way too much too soon.I was sure I was going to be able to nap at some point. But I didn’t. I took the kids to the video store. I went to Target for diapers and wipes and other household necessities/stuff I wanted. Then I had to make Jesse pack a coat, double check he had his passport, and hug him really hard. I miss him already. The kid has only been on a plane twice and both trips were to Europe.

I have only been as far as Mexico. Somehow the idea of never getting to see another continent is kind of a bummer. I guess people make those lists of stuff they want to do before they die. I don’t have one. It would be too long. I put off doing a lot of things because I wanted to have a big family. I wanted to be a mom and a student. So well traveling was something I was going to do later. Now I am not sure what later is.

It makes me happy though to think about Jesse going off to Europe at 16. And Alec going away to college. Not hanging about his hometown. Or the twins getting a very special private school education that will enrich their lives forever. That will provide them with so many opportunities. Or Bailey following her artistic dreams. I am quite content that in their lifetimes they may do many of the things that I put off. It was enough for me to be a mom. A punk. A student . A graduate. A childbirth teacher. Kelly’s wife. Your friend. Maybe I will get to Europe. It would be on my list. But maybe a trip to Dollywood would suffice. I would be happy with that.

 

Well as expected one by one my family got sick. First Clay then Bailey now Jesse. Kelly says he feels like he got beat up. I concur. We both feel quite sore and achy. My stomach is in knots. My day has been filled with hurried trips upstairs to the bathroom. I like to think that I have already been exposed to all this stuff after having my first five kids. But alas this is a new strain of dreaded bug and I am at a loss to defend myself.I went to bed last night at 6pm. I woke up with Clay at 7:30am. And I still felt very tired. It is interesting that no matter how sick I am I still need to get up with the baby and take care of the puking children. That’s being a mom. There are no days off.

Megan came and got Clay on Monday after I wrote the above paragraph. I was totally too sick to take care of him. I was really sick. Jesse was as well. Today is Tuesday and we are on the mend. Slowly. I had to run errands today despite the pain in my gut. And the fatigue. I got insurance for the new car. And a bit of food at Trader Joe’s. We got back to the house and Jesse began packing and cleaning his room. He leaves for Liverpool England tomorrow night. He is pretty excited. His principal called to make sure he was healthy enough to go to England. He wanted to make sure he would not be puking all the way over there. I assured that Jesse was better and he was well enough to leave the country.

Clayton is still dealing with his ear infection. He has been sad, crabby, clingy, tired, irritable, and sick for days. I am torn between being incredibly sympathetic and very annoyed. There is a limit to my patience. Sometimes screaming because I need to stand up is just a bit much. I have been thinking about this whole being a mom with sick kids thing. I think I have seen it all. My kids have been to the emergency room dozens of times. They have had the flu, lice, chicken pox, and intestinal bugs that made me throw away good linens. You think with all that experience it would not bother me that Clay threw up macaroni all over my bed…but ya’ know it is still gross after all these years.

We have a million stories about ailments that made their way through the home from one member to another. Now it all seems a bit funny. At the time it was anything but. And of course nowadays its me that is usually sick. Me who is sleeping on the couch unable to do her chores. Me who is rushing up the stairs or crabby from discomfort. Me who needs a nanny. I am the sick one. The sinus infection became an upper respiratory infection now it is an upper g.i. infection. Oh the joy of a depressed immune system. But on the upside I don’t feel like I have had much pain in my collar bone. Or maybe the pain in my stomach has canceled it out.

Now I am not complaining I swear. We all get sick. And it seems like every family I know has been sick all winter. Not a problem. For me it sends to a really bad place. When I am sick I instantly feel like a bad mom. And since having cancer has left me often in a place where I could not be there 100% for my family it has been a constant struggle. I get really depressed. Yesterday I convinced myself that Clay was not “attached” to me because I have been sick most of his life. I convinced myself that my 16 month old does not love me. Last night I was hysterical crying about it. Seriously. So I prayed for a while and fell asleep. And since I woke up this morning Clay has not let me out of his sight. Now this to me is a cosmic joke because I did not have this in mind when I was praying that my son be more attached to me.

It is really hard to push the publish button after I write all this personal stuff down. Who knows how it will be interpreted. All I am saying is it sucks to be sick all the time and feel like you are not doing all you can for your family. Any chronically ill person will echo those sentiments. And it is exhausting to have a house full of vomiting children and be sick yourself. Any parent would agree with that. I am not unique. I just happen to have a place to air my dirty puked on laundry.

Wow where to begin. Saturday morning started off well enough. We were all excited to be leaving for NYC. In the morning I noticed Clay wanted nothing to do with breakfast. But since he is toddler I thought little of it. Ori was here at 9am fully prepared to watch Clay for half the day until Jenny came to pick him up. Bailey and Alec were here as well to help out. Just before we left Clay threw up. Not a lot, but it had me worried. Kelly and I thought since he seemed happy enough that it was a one shot deal. We left with Jesse and his girlfriend Laura at about 9:30 am in high spirits.

After about an hour of driving I was compelled to call home. And Ori informed me that Clay had been throwing up since we left. Well projectile vomiting actually. All over Bailey, Ori, Alec, the floor, the couch, my bed, all the bedding, and every thing else in the house. When he was done throwing up juice and water he threw up bile. I was devastated. I felt trapped. I am the worst mom ever I thought. We couldn’t turn back. It just made me feel helpless. But Ori was so cool about it. “No big deal” he said. “Clay is very happy”. “Then he just pukes everywhere and goes right back to playing and laughing”. This was his reassurance.

I had no idea what Jenny would say or do given the situation. But like the sweetheart she is she showed up as promised at 2pm and took care of him. She took him to her mom’s because she said she would feel better with an “expert” around to help her. She texted me a message that said he was doing much better and that I should enjoy myself.

Drama part 2. During the intermission of Spamalot I realized my wallet was not in my purse. I had not pulled it out since we had arrived in the city and my mind raced to the worst conclusion. I told Kelly we needed to confirm whether I had left it in the car. I could not wait until the play was over to find out. He agreed and we left Jesse and Laura and headed for the garage. Kelly was being practical about what are options were. Cancel the cards. I broke down. I just was devastated at the idea of losing my money, credit cards and personal information. When we arrived at the garage tears were rolling down my face. Kelly was being kind but I could tell he was disappointed in me. I approached the attendant and blurted out “I can’t find wallet”. He said, “no problem” and another attendant headed for the car. I collapsed on the bench. I cried, “Jesus please let it be in the car”….moments later the attendant waved to Kelly. He disappeared behind the barrier as I waited. Soon the attendant appeared and he smiled at me. “Is it there?”, I yelled. He nodded and came toward me. I jumped up and he said, “don’t worry pretty lady it’s ok”. I hugged him. Kelly appeared soon after with my wallet. I was so relieved.

As was Kelly. He embraced me and reassured me over and over that it was ok. He is always so worried about me. His first thought was that this was all too much for me. That maybe a big trip like this was more than I can handle. I resisted this idea. I want to do stuff like this. I want to push myself a bit. I want to have a lot of good memories. I want the kids to have a lot of good memories. Big things like this are so necessary. He hugged me and assured me that if I want to keep doing things like this we just need to find ways to make them less stressful for me. I know what he is saying. But the idea of giving up on trips to New York and wherever is too sad. I want to keep doing fun things. Until I really can’t.

We headed back to the theater to catch the end of the play. Before we went in Kelly bought me a t shirt. It says I’m not dead yet. It’s a line from the play and the movie the Holy Grail. If you like Monty Python you now how funny it is. But I liked it because of my diagnosis. “Hell yeah I’m not dead yet!” Kelly and I made our way back into the show to catch the end of it.We had balcony seats that were very difficult for me to climb the first time. As we reentered the theater I said to the usher, “I have cancer and I am on chemo.Can I just stand here instead of going back up those stairs?” She said, “no problem”. So we stood in the back and got a great view of the show from the first level. I played the cancer card. It’s true. But honestly I could not do those three flights of stairs again.

The show itself was very funny and well done. I loved it as did Jess my Monty Python fan. I liked the humor, costumes,set etc. But what I really like was the underlying message that we all need to find our grail, we need to have a quest and find what is fulfilling and important to us. I am not being deep. They actually say this in the play. I just found it moving.

Jesse and Laura met us outside the theater after the show. We hailed a cab to dinner straight away and soon enough we were in Chelsea at the Trailer Park Lounge. The screen door entrance was a lovely introduction to the white trash decor. The whole place was decorated in signs and pictures from the 50’s to 70’s. Icons like Dolly Parton and Elvis Presley graced the walls. Everywhere you looked there was something cool. The food and service were great. We had a very nice time. Our waitress took a Polaroid of us to commemorate Jesse’s birthday. We had moon pies for dessert. After dinner we cruised around the neighborhood a bit taking in all the surroundings. I do really love New York. It is so huge and busy. The kids seemed to be just a bit in awe of it too. Although Laura is in New York quite a bit. She was a little less impressed by the tall buildings a masses of people. Soon after we were exhausted and decided to head for home.

Traffic and all it was a really nice day. We got to enjoy ourselves after the crisis passed. My pain was intermittent and took medicine when I needed to. Which may explain how i managed to leave my wallet in the car. My left arm that has lymphedema is well…huge. Sadly, when I do “too much” my arm swells up. I find it embarrassing. But I can’t sit around and not live my life because of a swollen arm. Or my pain or even my stupid cancer.You only live once and I ‘m not dead yet.

This is a picture of the car we bought today. Well put a deposit on actually. We will pick it up next Wednesday. It’s a 78 Ford station wagon. It only has 84,902 miles on it. And everything works on it too. It was a tough decision whether or not to buy a car. But we really do need one. My friend Kristine has been loaning us her car for quite a while. This one needs a bit of TLC. And it has no radio. But that’s ok with me. Kelly found it on craigslist and we went to see it this morning. It drives very well and the engine is super quiet. It feels good to have one thing we need crossed off the list. Next a house, a dryer, a laptop for the twins etc etc.

Honestly, the list seems to be never ending. I spent most of the last couple weeks feeling intensely depressed about money. It always seems like we need things, the kids need things, and even though we eventually get them, its hard to wait. It’s hard to put off getting them shoes or the clothing they need. It was hard to not have a car for 7 months. This may seem more intense right now because our landlord told me he plans to sell our home. I was stunned. I had thought that since homes are not selling right now, that maybe we had some time. I guess not. Part of me wants to ask for help. Part of me knows God will make it right. I just have to trust Him in this. Kelly and I are discussing what to do next. We are fairly certain that we do not qualify for a mortgage. But we shall see. I am trying to not let the fear of being homeless well up inside me. We pay very little for rent and I can not imagine paying what every one else seems to be paying for a 4 or 5 bedroom. But then again I know God is good and He has always taken care of me in ways I could not have imagined.

My stressed out feeling is made worse by the pain I am having in my collar bone. The same pain I had in January. The same pain that sent me to the hospital. I am back on pain medicine. I sit on the couch worried that my cancer has spread. I found myself crying in the car today saying I don’t want to die. Does this pain mean my cancer is spreading? Will I have to switch chemotherapy medications? Kelly tries to reassure me. But like Ruth said last week, yes I may die but my kids will be well taken care of and they will get through it. Sometimes that answer isn’t enough for me. Sometimes it just makes me feel lonely.

I don’t mean to sound negative. Its just that I am in a lot of pain. And I am very worried about money and having money for my children so that if/when I die they will be provided for. Does this even make any sense? I am praying. I trust God. I just wish I knew why the hell I am in so much pain. And if it is my cancer spreading it just feels like the end to me. How many more medicines can they try before they tell me there is nothing else they can do? And of course I am saying all this out of paranoia. For all I know I may have pulled a muscle. But once you have cancer you think every ache and pain is cancer. Its hard to not be scared. I am very scared.

I say that and at the same time I know that I will accept whatever God gives me. I just pray that He wants to give me more years. Part of this stress and fear is that I know the average life span for a stage 4 IBC patient is 2.3 years. I am coming up on one year. The time slipping by gives me no reassurance at all. I fear I will be a statistic. I want to beat the odds. I want to be a survivor.

Years ago my friend told me a story about her family. Her grandmother had 12 children. She loved being a mom and doted on all her children. She made their clothing and cooked huge home made meals every night. She told them that if she ever died she was taking them all with her. Morbid I know, but loving too. Sadly, there was a house fire and all but three of her children died with her. The surviving ones were never the same. I don’t want to take my children with me. But I know the pain of not wanting to leave them behind.

While we were with the guy who sold us our car he mentioned that his mother is clairvoyant. Apparently she reads tarot cards and predicts the future. He told us she believes the world will come to an end in 2012. Later Kelly said see honey you only have to live 4 more years and then we will all die with you. It was almost comforting.

If you did not get a chance to catch Learning from the heart it will be on 2 more times.Also if you live elsewhere in the country it is supposed to be broadcast nationally. That being the case maybe you can check it out with your local PBS station. In any case I hope some of you got to see it. I am pretty happy to be part of such a nice show.

I spent the day with Ruth on Monday. I forgot she was coming over. I was thinking about how I still felt sick and I was going to be alone. And then Ruth walked up to the house. Here is how God helps me. In all seriousness this is how I find God. He never forsakes me. We went food shopping and to the playground. She helped me with Clay. She helped me feel like me. When I start to feel sad or afraid Ruth cheers me up. Like many other friends Ruth has been here through this whole experience. She was talking with me about what I was like on the “old chemo” regimen. She was saying how I was always repeating myself. How I would go off on tangents. I felt slightly embarrassed. Like a drunk who knows they were talking shit the night before. I really do not remember the summer. I feel like it was all a dream. Or a nightmare. I don’t really remember the day to day. Or even how I was. Except I know I was often angry(steroids) or depressed(hormones). I was usually tired (chemo) and out of it (chemo brain).

I told Kelly and Jesse what Ruth said and they both chimed in. Jesse said “Bad drunk” you were like a bad drunk. And then you would sleep it off for a few days after chemo.Kelly agreed that I repeated myself.Or I would say I told him something that I hadn’t. I would tell him something that I already said. I would argue about nothing. I would tell the same story over and over. I felt so bad. It made me appreciate how difficult it was to live with me. It made me feel empathy for my family and friends. Kelly said he feels like he is just now getting me back after nearly a year of treatment, surgery and medicine, all of which altered my state.

It is hard to know if some of the emotional struggles I have had over the past nine months were “drug induced”. I paid a huge toll in relationships this year. My marriage was a struggle. Even my closest friendships were difficult. I was not myself. I had difficulty remembering things. I had difficulty engaging. I was very wrapped up in what all this meant. And I found it difficult to be vulnerable in front of even my most beloved friends. I wanted to be strong. Chemo kicked my ass. And cancer is a bitch. And I lost myself for awhile. Riding the pharmaceutical horse. Now I just feel like I am starting to process a lot of this. It is still a lot to understand. But now I feel like I am doing it with a very clear head.

Today I felt like I could let my guard down and talk to someone else about this walk. And I cried and she cried. I just want so much to be alive for many more years. It just hard to not know. Like I said I am doomed. And like Kelly said we are all doomed. I think more than anything I just wish I knew how long I have. But I don’t so I am trying to get things taken care of today.

Thanks so much to everyone who put up with me for the last 9 months. And for all of you who suffered my roid rage or premature senility. I love you all.

It had not really occurred to me that this Sunday was my friend Merle’s memorial service. I felt glad that I had not gone to Virginia for the weekend and missed it. I went to the restaurant where the services were being held with my friends Mariko and Dan. Since Merle was a midwife there were lots of babies and nursing moms. There were several people there I knew. A couple that I taught childbirth classes to. A few people I knew from the birthing community. It was very sad and overwhelming for the people she was closest too. But I think that is often the case. Too many people showing love and support can feel very overwhelming. The facts surrounding Merle’s suicide were made clear to me today. The things that I had questions about were answered.From discussing the situation with her closest friends its obvious that everyone around her was doing absolutely everything they could to protect her and her daughter from this exact situation. I felt relieved to know that there had been intervention. And I was sad to learn that all the people around her felt she had turned a corner only to lose her days later. I just wish Merle could have believed she was strong enough to go on.

During the day I had a reoccurring image of her and I at Clay’s birth. The two of us interacting while I was in labor.I thought about how both of us were doomed. Marked for death. Is it a blessing that we do not know what things will befall us?Is it a good thing that we have no idea how long or short our lives will be? Am I glad that I had no idea that 6 months after Clay’s difficult birth I would learn that I had stage 4 cancer? Or that 14 months later Merle would have a baby and then decide to end her life? We were doomed and we did not even know it. I shared this with Kelly. His response… “aren’t we all doomed?” I guess so.

I told my friend, the midwife, that maybe some good can come out of this. She will never let a mother with postpartum depression slip through her fingers. And that can be said of my situation as well. The midwives and childbirth educators I know will tell all new moms to see their doctor when they have a breast infection. They will let them know about IBC and insist they take it seriously. This is all I care about. That my illness not be in vain. I think Merle’s death should not be in vain either. We just need to be very tuned in about how a new mom is feeling. How is she coping? I think it has really opened my eyes about depression. And that is not a bad thing.

Nevertheless the sense of malaise remained with me throughout the day. I would feel sad, ask myself why am I sad, and then remember it is because my sweet friend died.

I used to have that feeling all the time after my diagnosis. I would be having fun with the kids or just playing with the baby. And I would be aware of this nagging sadness and I would remember oh yes I have cancer. It just seemed like something I could forget once in a while. Now it is just something I know. I just don’t feel as depressed by it. I just have to live anyway. I am not sure if I think about it all the time. I think a lot of the time I am thinking about the stuff you do. Bills. Kids. Pizza. Housework. Angelina Jolie and Brad Pitt. Sometimes I wonder how long I will live. Sometimes I think is my cancer spreading? Is the chemo working? I spend a lot of time praying. I spend a lot of time just trying to be happy while remembering I have cancer.

Today may have been more difficult than some but I am sure there are more of those to come. Just as I am sure there are many good ones to come as well.

Just a reminder….I will be on PBS tomorrow night(Monday the 3rd) at 9pm. “Learning from the Heart” It is just a few minutes in the middle of the program. Watch it if you get a chance.