Archive for August, 2007

Punk Rock Mommy

Tuesday, August 14th, 2007

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Ironically or maybe predictably I took a “what kind of mom are you” quiz. And apparently I am a punk rock mommy! So as a trivia question who can tell me who that is a picture of? I will give a t-shirt to the first three correct answers.

I am happy to impart punk rock wisdom to my children. Think for yourself. Think outside the box. Do not let others dictate to you what is normal. Challenge people’s ideas about what it means to be a Christian. Be yourself. Do not fear new things. Love the Clash. Love independent music, movies , skateboards, and politicians. Kill your television it will rot your brain. Love the thrift store. Enjoy art..all kinds of art. Your first tattoo should always say “mom”. Don’t worry about what other people think. Forge your own path. And have fun.

Of course I teach them the “normal” stuff too. Its good to wash on a regular basis so you are not the smelly kid. And so you can grow up and get a girlfriend and a job. Trust God. Trust your family. Don’t steal from anyone. Don’t hurt people. Love your family and friends. Be thankful. Be patient. Be forgiving. Take responsibility for everything you do both good and bad. Hold babies every time they cry.Accept what life has to offer in terms of challenges but do not be afraid to change. Fight for what you believe in. Laugh often. Cry some too. Eat good food. And play board games whenever possible.

Being a mom is what I have been doing for more than 17 years. Sometimes I worked. Sometimes I was a student. Mostly I was a mom. I am still a mom. It is what I do with the bulk of my day. When my children are not with me I feel weird. I do not feel fully at ease when they are not in their beds at night. Being sick from chemo is a huge inconvenience to me. It cuts into my mom time. I lay in bed after treatment and hope and pray that it will be a short break. I actually miss being around them when I don’t feel well. I look forward to playing and hanging out.

I also go through the trials of parenthood as well. Sometimes they get too loud. Or they decide to ignore me. Sometimes they blame everyone and everything for their problems. Sometimes they refuse to accept “no” for an answer. When I feel good I can meet these challenges with love and patience. When my patience has worn thin from a cocktail of chemo, lupron, and steroids I am less than capable of the task.That bums me out. I feel like it is very important that my children feel loved and nurtured. When I don’t have it in me I feel like a failure. I judge myself so harshly. I feel like if my time is limited I need to be the best mom every day. I pray for that. I want to be super mom. Instead I am punk rock mom. I scream. I sweat. I love them. I am a mess. I am human here me cry. No strength. No bravery. Parenting its a dirty job….good thing I like dirt.

They teach me a lot about forgiveness. And fun. And unconditional love. I like them. They are my favorite people. They like what I like and they are nice to me, even when I am a jerk. I am a lucky mom.

I love you all….Alec Dylan, Jesse Wayne, Tucker James, Asa Spades, Bailey Elizabeth, and Clayton Michael. Thank you all for giving me the best job I ever had.

In the genes

Tuesday, August 14th, 2007

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Here is an excerpt from a recent comment about what causes cancer…

FYI there are only six things the cells require for perfect health. I would think for the sake of your children you would inform yourself what these are and begin to consume them daily, TO ASSIST IN THE FIGHT (omega 3 oils are only one of the six ESSENTIAL ingredients.

Secondly, the very best lymph cleanse occurs through jumping (per Albert Einstein who stated that the most powerful force on the cells is via gravity),
so a poperly designed mini-trampoline (called a Celluciser) is in order.
Let me know if I can be of further assistance to you.

A response from my smart Alec

Hey everyone, Alec here. This is my first post ever, and it also happens to be a response to some comments being made by Glenn Bogue. I’ve been reading his comments and found much disinformation in what he’s saying.

First, Cells require two thing to survive: Glucose and Oxygen. The glucose comes from ANY food we eat. When we eat, our stomach acids break down the food into its simplest forms. These are the glucose, and the waste. This glucose is actually not used in cellular activity. The cells convert glucose into a smaller more usable amount of energy called ATP. A good way to visualize this is to imagine that glucose is a $100 bill, and you want to buy a $2 burrito, Your cellular function. Instead of paying with the $100 bill, you convert the $100 bill, into $100’s in $5 dollar bills. It is more efficient to use the smaller single denomination then all of the larger denomination at once. Anyway, the glucose is stored in the cell and in the body as fat. What makes glucose not be able to be the cause of cancer is that glucose, whether from a good or bad source, is glucose. When you look at from a chemists perspective, Glucose will always be C6H12O6. Any addition or change to the molecule will make it no longer be Glucose, but something else.

Second, Cancer’s that have been proven to be caused by genes are inevitable. Yes, pollution and toxins can cause some cancers. For example, Lung Cancer can be caused by cigarettes and pollution. However, there has been instances where a person who never smoked, and was not exposed to high levels of pollution have contracted cancer. In actuality, you are actually more likely to develop asthma or Tuberculosis from exposure to cigarettes and/or air pollution. Yes, cancers have been known to be caused by extraneous substances, such as water pollution or radiation. However, the more scientists study the human genome, the more we learn about cancer and its causes. All this means, is that Cancer is a problem in the genes, NOT the immune system. Cancer is defined as “any malignant growth or tumor caused by abnormal and uncontrolled cell division“. In the cell, there is a protein that stops cell division, much like the hormone that tells you that you are full (of food). Now proteins are made up of 20 Amino Acids, and as my biology teacher says, they are “the very building blocks of life”. The arrangement of the amino acids is directly taken from the template (or blueprint) established IN THE DNA. If the DNA is incorrectly copied during the S phase (or synthesis phase) of Mitosis, the protein may not be created. Normally, these cells are destroyed before they can do any damage. But if the cancerous cell replicates to quickly, the body will not be able to eradicate it.

Finally, the idea that jumping up and down will clean your lymph nodes is preposterous and is obviously based on now obsolete ideas about cancer and its causes. In the 1800’s and early 1900’s, it was believed that people needed to clean their blood everybody by slitting their wrists. This is now seen as absurd as well as unnecessary, much like “The Celluciser”.

Knife throwers and fire eaters

Monday, August 13th, 2007

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Wow! It was really so wonderful to get to spend time with Dr. Dan today. He is an amazing man and truly had a great deal of insight. I was a bit nervous in the beginning. But as it went on I felt more at ease. If you missed it and want to listen HERE is the link. From here you can podcast today’s show. I did my best to get the information about IBC out there. Some people commented on the idea of strength and bravery. I just hope that everyone understands that is really hard to digest those concepts when you are just doing your best to live your life. I hope NONE of you are ever faced with this. Cancer sucks! Chemo sucks! But you still have to LIVE.

And as I expected some people felt very strongly that nutrition not genes are the reason I have cancer. Well you are certainly entitled to that opinion. FYI we were vegan for like 12 years! And I still got cancer. I know a lot of vegans and macrobiotics who get cancer. And genes are not effected by environment. If I am wrong about this feel free to comment. I ate a lot of antioxidant food. And enjoyed some junk food too…not fast food…not frozen food. Anyway, I am tired of this argument. And I think homeopathy is great. I have used it a lot with my children. I used it in my pregnancies as well. But again I feel certain that it will not effectively remove cancer from my BONES! And again you all can do whatever you want if God forbid you are faced with this decision. I am choosing to use the technology that is in use now. In fact my cancer is hormone positive. So the main source of attack is withdrawal of the hormones that “fuel” my cancer. The chemo then further attacks the cancer cell. So unless you really believe that arnica and/or flaxseed could successfully shut down my ovaries and kill my cancer I think we should just let it go.

If you are new to my blog go back and read anything …comment..whatever. There are great pictures that my dear friend Jon O has taken of our family. It is hard to let all of you into my life. It is hard to be honest knowing it will be scrutinized by so many. I am getting over the weirdness of it all. The new “normal”. In the end if you get anything out of it I am happy. Also please know that if you feel compelled to help our family in any way let me know. If you feel moved to get our pink nautical star tattoo please call Kelly, my husband, at Body Graphics Arch Street or his cell to schedule an appointment. Also our dear friend Shayna is doing Susan G. Komen 3 day breast cancer walk in my honor. All donations support cancer research. Here is the link for her donation page http://www.the3day.org/philadelphia07/shayna. We appreciate all your love, prayers, and support of all kinds. Our family is truly blessed by the kindness of so many.

When I think about the blog my deepest hope is to get the information about IBC out there. I do not want anyone to have to suffer or wait with the symptoms of IBC. And I want people who are unfamiliar with the ins and outs of cancer to gain some understanding. And lastly, I really want my loved ones to know how I am doing when they do not get to see me. I hope you get what you are looking for..thanks for visiting.

Love, Andrea

What else?

Sunday, August 12th, 2007

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I haven’t wanted to blog lately. I fell like unless I am happy I have nothing to say. I am not unhappy.I just feel like there is a lot going on. Some of it makes me feel sad or overwhelmed. Some of it gives me hope. But if you really want to know what is going on I will talk about some of it here. But it will likely be somewhat disjointed.

I was upset with my oncologist’s choice of tactics in fighting my stage 4 cancer. I was very angry at myself for being foolish in thinking you can just choose a doctor because you like them. I had the best doctor in this area look at my case. And then I switched to her. She has had a lot more IBC patients. I am sad about the switch in some ways because I was/am very attached to all the people at Pennsylvania Hospital. But I can’t stay because I love them. I have to leave because I love me. Rob’s friend Katie sent me an email that said, “I know a lot of women who stayed with doctors they liked…they’re all dead now.” I think that says it all. Dr. Demichelle’s approach was very different. Chemo wise right now it would be the same but after that not at all. I don’t want to get super technical so I will just say that I felt I liked her plan better based on what I was reading and learning from other IBC patients from across the country.

I had an MRI of both my breasts done last week. I fell asleep. Sound asleep. I love that thing. Anyway, the technincian gave me a cd of the scans. So if any of you want to read them for me awesome. Otherwise I find out the results on Thursday. Oh and I need a ride to that appointment. Its at HUP in West Philly @1pm. Any takers?

The twins are home but I feel like I have barely seen them since our lives are so freakin busy! We are all in and out of the house all day long. I think it’s so funny. And sad probaly too. The twins had an amazing summer with Naomi and her family in Va. They seem really strong emotionally and look very fit. I had to tell them I was stage 4 when they came back. They were sad but handled it very well. I think the main thing is just expressing the things that I express in the blog which is that life is unpredictable and no one knows what the future holds. We just need to live for today. It is lovely to have them home. My house is loud and full again. I am looking forward to the last month before school to hang out and play together. I love my kids.

I had a bunch of anxiety dreams this morning. One where my estranged father showed up at my house. This dream made me feel sick as I want nothing to do with him or his wife. It is hard to explain but I feel like I can forgive them for anything bad they ever did to me, but I do not need to be their doormat to prove it. In the other dream, I missed being on the radio with Dr. Dan because I went to a doctors appointment and forgot about the radio show. Anxiety. A lovely emotion. Messing up my sleep. I woke up and prayed for a really long time. I still feel anxious. Maybe if you pray for me too that would help.

I have decided to go to California to meet with the people doing a clinical trial of Rexin G. If I get into the trial I will need to live in Santa Monica for a year. I will bring Jesse and Clay with me. I will discuss this in long extensive detail IF I get into the study. There is no sense in getting all excited yet. If you have family or close friends there I may need your help. Or if you or a close friend work for the airlines, I may need some super cheap airfare. One day at a time. Right? I am leaving on September 4th, and our meeting is on The 5th. Please if you love me pray I get in. This would be huge! And yes the kids know. We have talked to all of them and they all said go for it. They want me to get better. And they all seem prepared to make the sacrifice.

Ori says it has been a rough summer all around. People have been experiencing a lot of challenges. Illness,death,surgery,break ups, job loss, business problems,ex-problems. I know there does seem to a universal heaviness among my friends and family. Let’s all take a collective deep breath and try to relax. Hard to do. Let’s go. Come on in and out. Its going to be ok. We can do this. Good things are right up ahead. Today we are all here together. We have friends and family that love us. It is all going to work out. On days like this meditation and prayer make all the difference. I just need to remind myself that God has a plan and it can and will work out.

Love you all. Andrea

Wednesday, August 8th, 2007

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I woke up this morning with no voice. My throat was closed and just a squeak sound came out. My voice improved a little bit through out the day but not much. I think it is God’s way of telling me to shut up. I feel like I do a lot of talking. I know I know I do talk A LOT. But I mean more than usual. I have been trying to connect with a lot of people. Make plans. I just can not seem to be quiet. And that is a shame. Because right now I should be doing much more listening.

I have a tendency to get excited about things and just off I go. I decide I am on a mission and I will not listen to anything anyone else has to say. I have been stuck in a self centered whirl wind since my diagnosis. Some of it is good..you need to focus on yourself in a situation like this. But I also realize that it is really hard to lift my head and say, “how are you?” When I do connect with my friends and really listen I usually feel much better about my world as well.

So today as I drove to and from acupuncture I got to talk with my lovely friend. And at first I did not want to listen to her opinions, thoughts,etc. I was going to use my weak hoarse voice and that would be that. But part of me..a big part of me was tired of talking and listened. I heard her asking me important questions. And I did not have all the answers. As we drove home she imparted me with words of wisdom over and over. She talked about herself, and friends, and me and I heard everything she said. And I was thankful that I did not do all the talking. I am thankful that I know very little but surround myself with awesome guides. Today I am glad some of you challenge me to be a better person and risk having your face chewed off for attempting such a daring feat. I agree with those of you who have very recently asked me to slow down and think things through. I am trying to do that. I appreciate your love and concern.

I had a long amazing acupuncture session with Ed at the Won Institute. He spends a lot of time asking me about my life before he works on me. I usually think that we are just gonna start with the needles. But we don’t. Today I realized Ed is like my therapist. I had no idea until today when he said ,”How do you think Kelly is doing?” My first thought was Omigod he knows my husband’s name! He listens to me! My goodness I thought we were all business. It was actually a relief to be asked about Kelly. Since I got sick people don’t seem to ask me how he is doing. And I don’t usually ask him how he is either. I do a lot of guessing. I guess he’s ok. I guess he’s mad. I guess he’s tired. To find out I might have to listen..the horror. But back to Ed..he listens. He gave me a long treatment on my back to build up my blood. That should help my fatigue and with my blood counts. At one point Ed opened a needle and said for this point we use this gold needle..real gold. I was actually a bit excited. I was feeling pretty upper middle class. I allowed my waiting time with the needles in me to be a time of prayer. I didn’t allow myself to wander or pray for only me. I prayed for my friends and loved ones. I allowed myself to meditate and relax my mind. I was trying to listen for God. I left feeling I had reached a certain perspective that had been alluding me for days. That is to know what God is saying I need to stop and listen.

I have no doubt that the next time we see each other I will attempt to do all the talking. Its what I do best. But feel free to stop me at any time.

And even though this may be a funny time to mention it….I will be on the radio again with Dr. Dan Gottlieb this coming Monday August 13th. If you would like to you can listen on podcast or streaming on WHYY 90.9. That is from noon to one p.m. I plan on doing some listening as well as talking about IBC too. Please tune in if you can.

Love to all Andrea

Getting over it

Monday, August 6th, 2007

bailey-and-clarence.jpgBailey came into my room yesterday and sighed that she felt “overwhelmed”. She is 10. She said she was feeling overwhelmed at the thought of Asa and Tucker coming home and the change in the house. She missed them a lot but she fears that they will ignore her when they return, thinking that they forgot about her. Bailey is a sensitive girl. She feels things profoundly. We talked we took a deep breath, and decided to just be in the moment. We decided to just enjoy the day and let tomorrow be tomorrow. I know how she feels. Overwhelmed is a feeling that I have a lot these days. It is not just the whole “cancer thing” either. It is the pace of our lives. Things happen very fast. Decisions need to be made. Jobs need to done. Appointments, dates, and visits.I am certain you all relate to this. Maybe some of you are better than me at protecting yourself from feeling the world is leading you around. I am not so good at it.

Somehow I had mistakenly believed that being sick would help me focus more on the beauty of the moment. In some ways it certainly has. But it turns out that my children still need to go to the dentist and have play dates. We still have to pay bills and answer phone calls. So all my hopes of a peaceful and laid back life are usually quickly thwarted. The truth is I do not know how to not be overwhelmed. I have spent a lot of time to being an organized mom,wife, employee and student. I like to buzz around and do everything with immediacy. I sometimes feel like the only respite from this is my three day coma following chemo.

I feel overwhelmed a lot these days. I find myself obsessing about what needs to be done around the house. But I also spend a lot of time researching about IBC. I feel compelled to find the best treatment for my disease. Some doctors would say it does not really matter since I am stage 4 and nothing can be done to save me. I think that is so short sighted. There are women who are stable with bone mets for up to 10 years. I want to be one of them. So I am like a private detective trying to figure out exactly what treatment they received, how much chemo, what kind,how much radiation, which additional drugs, etc. As much as this actually helps me to be informed it also does overwhelm me. I am not a doctor so a lot of the information is hard for me to understand. And I stop feeling like I am in God’s hands when I decide to be my own physician.

Don’t get me wrong I think knowledge is empowering and it is good for me to be my own advocate. I just see how easily I can become lost in the sea of medical studies and forget that God has a plan for me…that may or may not include a “miracle”. I want to trust my doctor but put my faith in the Lord. When I lose sight of this I quickly become overwhelmed. I try to be in charge of my health…my cancer….my treatment…everything.

It is hard to stay in the moment or the day when I worry about what will happen next. What else do I have to do? Will I live and for how long? When I think this way I quickly fall into despair. Possibly this is true of many. We spend a lot of time worried,obsessing,making plans, and then we just feel consumed by these details. There is no way to feel relaxed and at peace if this is the pace of our minds or our day. My goal from the beginning has been to live one day at a time and to the best of my ability continue to grow as a person for as long as I have left. I really do not want to spend precious days feeling like the housework, appointments, or even the computer was more important then the simple things. I do not want my children to think that anything was more important than what they had to say. I do not want to become so engrossed in my cancer that I stop growing and changing as a person. Maybe I expect too much from myself. I don’t think so. I think it is possible to decide to live more simply and quietly. I am just not good at it yet.

A shout out

Friday, August 3rd, 2007

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I am just going to say a quick hello. Thank you to the few of you have brought meals this week. Great job. And thanks to those of you who cart my butt to and from chemo and acupuncture (Cindy and Heidi). I am thankful to Naomi and Sheena for their support and encouragement. And a big hug to Naomi Annabelle for having the twins for two months. I miss them a lot. But I think they had a better time in Va. then they would have had here.

I am pretty beat right now but I am not sick at all. I am thankful for that. Clayton was in a great mood all day and I got to spend some quality time with him. That’s huge because I am usually not able to handle being a loving mommy on day 2 following chemo. Of course Kelly,Alec,and Bailey also did some baby wrangling too. We try to keep it simple round here in the chemo coma days. Thank you to everyone who is loving and supporting us. I have a lot to tell you in the coming week but for now just know how much I adore all of you. I know I am truly lucky person to be surrounded by so much love and compassion. My symptoms from Lupron have edged off a bit I think. It’s hard to tell the difference between a hot flash and sweating your butt off from the 100* weather here. And who can tell if the mood swings are a result of the steroids or menopause meds? I asked for the acupuncture for emotional distress again. I pray that it works. Kelly is praying for that too. I love you all. Andrea

Miso tired

Thursday, August 2nd, 2007

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I got chemo yesterday. I don’t feel so bad yet. Mostly I am tired and it feels like I am walking in mud. It’s a strange sensation. In any case I am going to get a second opinion today at U of P with Dr. Angela Demichelle. I have an extensive list of questions for her as she is am expert in the field and knows a lot about my cancer. While Naomi, my friend Ori’s mom, was here this week we developed that list of questions. I am eager to hear what she thinks. I really want to be aggressive with treatment if it means survival. I have contacted some organizations that do nanotechnology research and have asked to be part of them. They involve injecting the patient with a cancer eating virus (oversimplification on my part). I told them my situation and I am praying that I can get into one. They are already talking about there use in metastatic disease and especially breast cancer. Pray for me, or cross your fingers,send out energy, whatever it is you do.

So as I like to do from time to time I have made an observation. As a society we are bombarded with studies that say certain things increase/decrease the likelihood of one getting cancer. Some well meaning authors have published books that blame food or a lack of vitamins or living close to power lines for our cancer epidemic. Yet, science seems to find a genetic marker for nearly all cancer. My question is then, if my cancer has been proven scientifically to have been caused by a GENE then why do people I meet tell me I get cancer because of what I ate, the lack of vitamins in my food, or where I lived. Is this a case of blaming the victim? Example…I call a woman who makes macrobiotic meals to see if I can occasionally get one instead of always trying to cook healthy for myself. I tell her my situation and she proceeds to berate me about not eating “macro perfect”. She tells me the miso soup I make is crap , not real miso. She tells me I need to meet with macro food advisers (that I can not afford). Nor can I slow her down once she gets to chastising me. I got off the phone and I was like “F*** her lets get a cheeseburger”. I am really amazed at a lack of sensitivity or decorum that people have. There are ways to express opinions without saying , “you deserve this cancer cause you messed up”. I am not sad about this just a bit taken back. The blame game. I think people do it to feel safe. Its like well I will do all these things right and I won’t get cancer. Or die. Well I have news for you that’s bull. I don’t care what you,eat,drink,or how few power lines you live near, we all die. Some of us live to be very old. Some of us do not.

My children’s Uncle John died a few weeks ago. He was 42. He was watching television with his wife and he had an aneurysm. There was no expectation or way to avoid that. It is tragic for his family, wife, children, friends. John was hard working. Loved his friends and family. The good man that he was is evident in the fact he was an organ donor and his senseless death gave life to many others.Thankfully no one will blame John for having an aneurysm. Thankfully no one will tell his wife that he could have avoided it by taking vitamins or eating the right miso soup.

I try to plan everything. I plan to be sick and well. I plan doctor appointments, tests, acupuncture,yoga classes. But some of the time my body has other plans. I try to keep that in mind. I am not totally in charge. I wake every day and tell myself it will be okay. Mind over matter. Sometimes I can will power myself a good day sometimes I can’t. That’s the nature of illness. You do what you can. My thoughts and prayers turn to all of you a lot of the time when I am in my chemo coma. I pray for Alainia who has IBC too. I pray for Meg’s mom that she will also remain cancer free. I pray for John’s wife and children, I pray for Tony to heal from his surgery. I pray for my friends marriages, I pray for some people to remain sober, for others to have peace, for some I pray for better jobs, sometimes I just praise and thank God for His blessings and divine plan. Praying is spirit over matter. It is always uplifting and reminds me that it is a big world and I am small. Not the center of the universe. And that’s a good thing.