Archive for April, 2008

Shore Thing

Monday, April 28th, 2008

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The weekend was lovely. I continued to feel fatigued but was able to enjoy it anyway. I had a wonderful visit with Lhianna and saw the new baby. A girl named Mahlon. She is perfect, with a lovely round face and long fingers.It was a very spiritual thing to hold her, smell her, and change her diaper. Babies are from heaven and I have always loved being around them. Surely this is no revelation to anyone who knows me. I have 6 of my own plus I spent 7 years as a childbirth instructor and labor assistant. New babies give me a “good one”. I love Lhianna and Clarence very much. I am thrilled for them. Being around new life is comforting. We know that there is a cycle and life goes on.

Today I went to my second pilates class. Tamara brings me for a private class with Catherine on Monday mornings. She owns a studio called Angler on Montgomery Ave. in Fishtown. They have dance, yoga,acupuncture. All kinds of cool classes for adults and children. Catherine works with me on gaining back a lot of my strength. I leave feeling energized and positive. There are things that I struggle to do even around the house. But when I work with Catherine I feel empowered. It has become something I look forward to. I want to be able to get around better. Grab a jug of milk. Hold Clay. Stuff like that. I want to feel less exhausted by every little thing.

So much of the weekend was tiring for me. I packed a lot for our vacation. Games and clothing. We have activities planned but we are so going to wing it. We were given ride passes for the Wonderland pier by my friend Tamara. Eileen has made all kinds of arrangements for us. We will try to take the kids to Cape May. They have a free zoo. It is small but very lovely. The free library is beautiful. Alec says he will “need” some computer time while we are there. No laptops! I said we can go to the library once or twice. I also have the MOST EXCITING NEWS EVER. Our dear friend Ori is friend’s with Dolly Parton’s manager. She is playing the Borogota casino in Atlantic City on the Saturday night while we are there. He got us free tickets!!!! I am over the moon. I just adore her. Since childhood. My “dying wish” is to take the kids to Dollywood and meet her. For real. Ask anybody. OK somebody vouch for this please. Gina will come down to hang out with the kids on Saturday night. Not babysit since they are all too old for that. Except Clay. We are just going to make the best of this time. Everyone seems excited.

The anticipation has been very helpful in diverting my energy from…” I am going to die” to ” I am living my butt off until then”. A huge difference I think. I am trying very hard to focus my emotional energy on the here and now. I am unable to do anything about the future. All of us are really. Being healthy affords us a certain illusion that we are in charge of our fate. Illness kind of strips you of that. So here I am with nothing left but today. And today is not bad. Today leaves a little to be desired in terms of the damp cooler weather. I wish I felt just a bit stronger. I wish Jesse would talk to me more about his life. I wish the twins hugged me more without me asking. I wish my husband spent less time on the ebay. But really it is a good day.

I think I will not be blogging during the vacation. I think you all should enjoy yourselves, your family, your friends. Maybe you should go the beach too. I recommend hugging people that is always nice. Perhaps start a blog. Or read one of my old posts. Tell me…have I changed? Or just tell me what you think. I’m open. I will be back in town on Sunday the 5th. And leaving for Santa Fe on the 7th. I will not blog then for sure. My plan is to do a lot of relaxing, meditating, praying, breathing and writing. I am writing love letters to some of my friends. And special words for my husband and children. The venue provides me with little distraction from this purpose. Alys thinks I am writing the letters so I can have the last word. She is probaly right.

Bloody exhausted

Friday, April 25th, 2008

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I am totally exhausted. My eyes hurt from being open, if that’s possible. I got up early this morning and got ready for my first appointment. I met with Dr. Mao my new internist. He just wanted to check my sugar. It is getting lower. He decided to increase my insulin and my oral medication. The overall appointment went well and didn’t last very long. When Gina and I left however we found that her car had been TOWED! Seriously. Gina was so calm and I just thought this sucks. We took a cab to the towing place and paid $178 to get it back! Somehow we got the car and still managed to get to my acupuncture appointment. I had Ed work on the nasty pain in my shoulder blade. He did his best work with needles and torture devices. It seemed to help a bit. Gina and I grabbed a quick healthy lunch and were on our way again.

We took 76 to Pennsylvania Hospital. We were about 10 minutes late. I waited for quite awhile for them to take me back. Eventually they took me to get my port accessed. And normally this is no big deal. But today the nurse missed! She stabbed in the chest with a huge needle. Blood went everywhere. I started crying. And they kept trying to access me. 2 more tries until she got it. I was so freaked out. Then back down the hall for my ct scan. Hold your breath…ok…hold your breath…ok. I felt so weak when I was done. Maybe it’s the contrast dye. All I know is that I am drained.

Dr. Mao wants me to start walking. In the woods he said. He wants me to get fresh air. He thinks it will lower my blood sugar. I just want to sleep. I am still “digesting” all the change. I am trying to figure out what I feel. I think sometimes these changes in treatment make me feel closer to death than cure. I am going to talk to Dr. Demichelle about radiation to my neck. Maybe just to shrink down the mass in my throat. It is just another thing to try. It’s amazing what your mind obsesses on when you are dying to live.

So it is Friday. My weekend is without plans. Other than to see my friend Lhianna and Clarence’s new baby daughter. Lhianna gave birth to her at home last night. 3 hours. My heart was filled with happiness to hear this news. It makes everything else seem so insignificant. So I am going to nap and then hopefully meet the new baby. And spend some time with my babies. And packing for our vacation.

Thanks to everyone who has been making food or sending it…Maiken,Geeta,Marti, Julie, Shareen.
Thanks to everyone who cares for the kids and I .You all make my life so much easier and joyful. I love you all. Andrea

A new drug

Thursday, April 24th, 2008

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In the few days I didn’t write anything I began to notice that the lumps in my neck were increasing in size. This is always a shocking and disturbing part of cancer. I tried to remain calm knowing that Thursday would come soon enough. I took my chemo. I got my insulin shots. I was having a great deal of swelling in my left arm from my lymphedema. I have also had a lot of muscle pain in my shoulder. It has kept me up for hours each night. Massage helps (for a while). I joked with Tamara that I have heard the expression that people take their pain and put it in a box. I think my box is my shoulder. All the bad stuff just goes there. So I am walking around with sailor’s knots in my shoulder.

I went to my weekly with Dr. Demichele anticipating little more than an acknowledgment of the increased neck lump. What I got was a total change in my chemo plan. She told me the Xeloda was clearly not working. She told me I need a ct scan tomorrow. She told me that my cancer is still being fueled by estrogen and until it is starved of what is feeding it it will continue to grow at this rapid pace. And then the draw dropper, she took me off chemo completely ( for the time being) and putting me on hormone therapy. She said I will need to be on it for 6 to 8 weeks to see if it is working. And she will monitor me closely, but if it works that would be amazing. It can not be used in conjunction with chemo so it was a radical move to do this. I was stunned at the idea. She assured me that this was the best thing to do right now. I expected her to say that more hard chemo was in store. So this was a bit of a shocker.

So this is not a chemotherapy drug. I will not lose my hair or be sick. Although Kelly has pointed out that being on toxic medications for a year has taken a huge toll on my stamina. I may or may not regain my ability to walk long distances and things like that. The name of this hormone med is femara. Pretty huh? I take one pill once a day. The pamphlet reads….Hormone – dependent breast cancers contain protein molecules called estrogen receptors. When no estrogen is present, the estrogen receptors remain inactive. When the estrogen receptors are exposed to estrogen, however, they trigger a chain of events that results in tumor cell growth and multiplication.

So the hope here is that my body starved estrogen will starve my cancer.I am nervous. I am happy to be off chemo for a little while. I am a lot of things. At this moment it is difficult to feel hopeful. Part of me is convinced my own doctor knows I am not going to make it. She told me she had been on the internet looking for alternative and experimental treatment for me. She wants me to live too. This last ditch effort could prove to be the answer. Only time will tell. Today is April 24th. I will be on this therapy until at least the end of June. I am fearful more than hopeful. Not being on chemo feels very scary. Even when it didn’t work I felt like there was a chance the poison would do its job. Now there is no poison. Just a starvation diet for my hormone hungry cancer cells. What now? I may be less tired and less weak. I may feel pretty good for the next couple months. I may see my cancer spread beyond repair. Or possibly even see it wither away and die. My prayer is that this treatment works. What else can I say loved ones? One day at a time.

Skin Deep

Monday, April 21st, 2008

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Typically I avoid long glances of my naked body, but recently I took a long look at my reflection in the mirror. It has been a while since I contemplated my physical appearance. I mean my scars. From my surgery. I stared at myself my changed and altered self. I realized that I am covered in scars. Most of which I acquired in adulthood. The first ones I see are on my shoulder. Three big holes that are there from a staph infection I got after a tattoo. It was not an unclean tattoo. I gave it to myself because I kept touching it. The infection required me to go to the hospital e.r. several times to have the wounds drained. It was very painful and I begged for all the numbing medicine they would dole out.

The next scars are cancer related. I see the small horizontal slash that resides over my port. This is how my chemo meds are administered. I love my port. No more endless needle sticks due to my bad veins. I don’t always like this scar though. It is noticeable with any kind of crew neck shirt. It is only a year old so it is still quite red in color. And it is accessed a lot so it seems to always have a bruise or puncture hole in it. The next scar I see is the big bad mastectomy scar. The one that made me cry for hours in the weeks that followed my surgery. The scar itself is different from one side to the other. On the right side it is flat and smooth. In the center I have what can only be described as a “belly button”. That is sadly what it looks like. I hate it. You can see it through my clothing. On the left side my scar is covered in the stretch marked tissue that used to be atop my breast. To be flat chested with stretch marks is a bit cruel. This side also looks like it has skin cancer so red bumps of various sizes crawl up onto my chest from the scar.

My abdomen has had stretch marks from pregnancy since I was 20. I hated them for years. But I had one child that was 10.8 lbs and my twins were 8.8lbs EACH. So there was no getting around it. They are my battle scars. As much as I once wished they were gone I know that I am proud of how I got them. When I met Kelly I was afraid for him to see them. Eventually he did. He loves me anyway. There are two other scars on my abdomen. The cesarean section incision from which Clay was born. A surgical procedure that undoubtedly saved his life. Although we planned to have him at home my conscious led me to the hospital. And at the delivery we found out that his head was not engaged in the pelvis. Just his umbilical cord presented on the cervix. A complication known as cord prolapse occurs when the cord is compressed and limits the flow of blood/oxygen to the baby. It is very dangerous. If I had not had a c-section this is likely what would have occurred.I am thankful that he was born safely.

I also had my appendix removed a few years back. I was in agony and went to the doctor. She told me she thought I had an appendicitis. I said “Do I get antibiotics for that?” “No you get surgery for that.” My scar covered body brings about many different emotions. At times I find it very disturbing. I am still human and vain. At other times I am more accepting of the situation. I have cancer this is what happens. I have never really heard breast cancer patients talk about the physical scars. We are so busy talking about the intense emotional issues that a scar seems less significant.

I have emotional scars too. I think if I could look at my heart/soul I would see twisted and ugly lines running all over it. Due to the damage of an unloving father, a harsh step mom, an alcoholic ex husband. Damage that I did to myself through sin. Acts of unkindness that I committed toward others. And the cruelty that at times was done to me. And cancer has scarred my inside too. My heart is broken for my children. It is marred and beaten from the day to day disappointment of not getting a “full ride”. It is a twisted mass that only resembles the heart it once was. It still has the same capability to love. It is just not as pretty.

I think these scars are really the tough ones. My physical scars I hide with a shirt. My internal ones I hide with a smile. Or I cry alone. I think the internal scars make us the vulnerable and damaged people we are. Maybe the past makes us more kind and empathetic. Or it can make us more closed and angry. The damage provides opportunity for change. My past is something I have learned a lot from. I choose my friends very carefully. I do not allow toxic people in my life. I protect my little wounded heart from those who intend me harm. I also let myself be open to love and joy because I am painfully aware of how short life is. I try to not be embarrassed by my flat scarred chest or my checkered past.

When we are close with one another those scars disappear. We don’t notice every flaw. If we do then we are probaly very unhappy. Love is about looking past the defects and accepting each other for what we are. My cancer has scarred my body. It has altered me in every way. But I am still me. And just as Kelly loves me though I am scarred on the outside he loves me with my internal scars as well. Beauty is just skin deep.

Live it up

Friday, April 18th, 2008

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It was a very busy week. Mostly I just tried to take advantage of my off week from chemo. Wednesday Jess and I went to see the Frida Kahlo exhibit at the art museum. We had an amazing time. The paintings were so beautiful. It was nice to have some time alone with him. Afterwards we had lunch in the museum restaurant. A lovely and over priced lunch. Life is short….right? He and I had a very nice time. We talked about Frida and her art. I felt very happy to have the energy to do the exhibit.

Thursday we had our appointment with Dr. Demichelle. I asked her about three alternative therapies/procedures. Two she had experience with and totally rejected. But she was very open about an ongoing study at M.D. Anderson in Houston. They are doing stem cell replacement. My Dr. knows the researechers involved and said she will email them for me. Also although my insurance company initially rejected my request for a ct scan in 6 weeks (instead of 12) they in fact changed their minds. I will be scanned the day after I return from Santa Fe. I am looking forward to it and dreading it at the same time. She felt my neck and said my cancer felt no bigger and no smaller. She felt my liver and said it was not enlarged. And the skin on my chest is no better and no worse. All of that is just fine. I am trying to just do this one day at a time.

I am living it up while I can. I have 2 weddings this month. Two vacations as well. Kelly and I spent some time getting a few new games and toys for the shore vacation. We are looking forward that special time. Kelly told me to beware that I not put a lot of “expectations” on the kids. I am so good at having grand expectations of everyone and then being let down. I think I just want to see my children and enjoy their company.

My blood sugar is coming down slowly. I am getting used to this whole business of needles,alcohol wipes, and sugar checks. It is very intimidating to be surrounded by so much medicine. All my oral chemo and pain medication. Usually I don’t need pain meds. But since my operation I have had a bad pain in my shoulder. I have rubbed it a million times. Acupuncture. I make everyone rub it. I decided to use our chair massager on in the middle of the night when I couldn’t sleep. I leaned on it for over an hour. Now I have two huge bruises on my back. Big red streaks. Crazy. And I am still in pain. I lost a lot of sleep last night. It is all I can do to keep typing. This morning Gina and I took Clay to a lovely playground. She chased him while I tried to write profound and important things in Alec’s journal. I am attempting to do a lot of serious writing for my children. Words of wisdom. Answering questions. It is kind of difficult because I feel like I do not want to write the wrong thing. I want it to be perfect. Although I am sure that is not possible. I want to tell him everything I know and at the same time point him toward God.

I am just making the best of this feel good time. Happy to not be on harder meds. I may be over doing it a bit as well. Which is kind of how I roll. I do everything while I feel well enough to do it. I think there is not a procrastinating bone in my cancer ridden body. It is all carpe diem. Today the kids had half a day of school. They are happy and energetic. I am sleepy. But I am thrilled to have this day. And the most beautiful weather! I retract my statement about bad weather round here. It has been in the high 60s to 70s. Each day has been a gift.

Sugar Coated

Tuesday, April 15th, 2008

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Some of my days just start early with visits and appointments. I am the hardest working woman in the cancer business. I am well on my way to highly paid motivational speaker. Today was the first day I had off from chemo. Yeah 7 days without Xeloda. So far my symptoms are minimal. I mentioned before that that could change on a dime so I have to keep my eye out for some nasty side effects. So far so good. I had the pleasure of Megan’s company today along with baby Ian. We spent a lot of time discussing my parenting stories and philosophy. We are toying with the idea of a memoir. I told stories that I had nearly forgotten. She remembered things I hadn’t. We also just chatted which was sweet.

Erin came to care for Clay. She and her friend( also Erin) took him and another little boy to a big nature trail and creek. She said Clay threw rocks in the muddy water for a long time. But his hands were covered in dirt and before she could stop him he put them in his mouth. Clay sucks the middle and ring finger. Anyway, he squashed up his face and tried to spit all the dirt out of his mouth but his frustration led him to redeposit the fingers into his mouth. Which of course made him upset by the dirt and nasty taste again. All of this occurred in like 5 seconds. Erin rescued him and cleaned up his hands so he could comfort himself from the ordeal. Not so sweet.

My old friend Shareen dropped off food. She brought lasagna, salad,chili, chips and cookies) This is too much food Shareen! I said. Well you have all those boys. Besides its for 2 nights. Indeed it will feed us twice. We took our time talking about our children and faith. Megan had left and we were alone. It was very nice to catch up. It is nice to rediscover why you like people. Today was like that. I talked about my cancer. How it has changed me. And how it has been interesting to see my faith in action. So much of my life as a Christian I assumed that I would take comfort in God’s plan or His words. But now I know what my faith is made of. Cancer sort of separates the men from the boys. I get sad. It digs in deep. But God comforts me. I pray. I trust. I wait on the Lord. I am so tough, right?

Shareen left to take care of a million other things. And Gina came to get me. Today was my first visit with my new primary care doctor. My appointment was for 2pm. At 3pm they took me back(with Gina) and we soon met with Dr. Mao. I had to pee in a cup and get my finger stuck( my sugar was 392. It is supposed to be 80-120). Yes I have type 2 diabetes. I was prescribed insulin( and needles, a glucometer, strips to test my blood the works) as well as an oral medication. Now I brought Gina because her niece has type 1 and she knows a little bit about doing the injections. But as nice as this doc was he explained Nothing to me. I mean I was scared to leave there with all the Rx’s and no real information. Not even a pamphlet. Thankfully, my pharmacist made time for me. And Gina stayed until late to do the injection for me. As well as teaching me how. I will be honest I thought it hurt. I really do not want to ever do this to myself. I don’t like needles. I know you are thinking Andrea you have all those tattoos. I like tattoos not needles. I don’t get a tattoo after I get stuck with this little needle.

I will attend a class on diabetic nutrition and excercise. I can’t wait( sarcasm). I mean with everything I have going on…this is absurd. I am hoping that it proves worth it. My muscle weakness has continued and I find it difficult to even climb steps. I have a hard time walking even a few blocks. I also have other diabetic symptoms that make my life difficult. So it is totally worth it to me to get my sugar under control. If only my inner mom could convince my sugar to “come down from there!”

Inner space

Monday, April 14th, 2008

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I remember a few years ago when people began to talk about the inner child. A psychological concept that we have small broken children inside of us. I rejected the notion outright. I have an outer child who needs an inner child. I have discovered recently that I have an inner mom. Its true. The voices in my head say things like,”Don’t forget to clean…” or “You should ask so and so how that test went” or “Make sure you pay that bill”. Sometimes my inner mom says “Now Andrea you know that’s not true, you have lots of friends, you are a very likable person.” My inner mom parents me and everyone else. I was never a child anyway. I always had a certain disdain for children. All that whining and mean spirited nonsense. I could never get used to the injustice. Or the boogie eating. I could never be comfortable with kids. My mom will attest to this. In fact Mom comment on this and tell them that I was born an adult trapped in a child’s body.

As a child I would sigh with dissatisfaction in the school yard. I hated being a kid. I liked adults. I looked for excuses to hang out with teachers since children gave me a headache. My inner mom always encouraging me to look on the bright side..eventually I would be an adult. It couldn’t come fast enough. I grew up faster than any kid ever. I wanted to help my mom balance our checkbook and go food shopping while my sister took gymnastics classes. All this led me to believe that I should never be a mother. But as soon as I did I thought it was brilliant.Now that inner mom had someone to take care of. I got to tell people what they should be doing. Wonderful. My inner mom was so busy. My outer child was at the playground going down the slide, my inner mom was reminding me to do the dishes when we got home and return a phone call. I found out I didn’t like kids…I just like my kids…well and occasionally some of yours.
My inner mom is very effective. It allowed me to be relaxed, comfortable and out going. All the while knowing that that voice would keep me on track. The voice that calms me when I start to feel all the anxiety welling up inside. The inner mom has been uttering mantra like statements. You are going to be fine. You can do this. Big deep breaths. It is my inner mom ( and my mom mom) that are so often moved to tears by my cancer. The inner mom lives to take care of everyone. The thought of leaving those I long to care for forever is very depressing. My outer child is having less fun than they used to as well. That’s cancer. What can you do? It forces you to grow up and take things seriously. It can put a bit of a damper on the evening.

Today my inner mom and outer child had a lovely lunch date with my daughter. We all had a very nice time. We went to the orthodontist. And my inner mom made sure that I picked up her medical card from Kelly. And my outer child played games with her in the waiting room.

Tear Jerker

Saturday, April 12th, 2008

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There are days in which you are far more “inspiring” to me, then I am to you. The comments seem to lift me sometimes. Lately, I have been quite sad. I try very hard to put it away. I rarely cry, but I can tell that I am somewhat detached. Not all the time, but enough of the time. I see in Jon’s video that I am not just tired but burdened. And who wouldn’t be? But I realize that I am not the person I was before. Naomi says I am quieter. Maybe. I think I am not as light hearted or care free. That burden is like heavy boots that make it hard to move forward. In all my life I never felt this way. Not during my rotten childhood or my painful adolescence or my difficult first marriage. I always found it easy to let go of pain and find every day happiness. I never got “depressed”. I don’t know that I am now..I still laugh and enjoy things. But it just a lot harder to get in the mood.

Thursday night we had a game night with the 5 older children. It was hysterical. We made a hybrid game of our own combining apples to apples with catchphrase. Its too much to explain but it was a lot of fun. We laughed for 2 hours. And we all know each other so well. We know how to make each other laugh. This was easy. The burden did seem lessened. These are the moments that I literally live for. I want so badly for the smile and laughter to come that easily. And its not like I am not happy to see people. Its just so hard for me to “forget” I have cancer.

Seriously, that is at the heart of my melancholy. I just want a day or a moment where it is not the only thing on my mind. Perhaps if I had some clear scans or was stable. Maybe if some period of time elapsed without having to face my own mortality. I think that have lost a bit of my “fight” or spirit. That is what it feels like. I have been at this awhile. Maybe not as long as some.But a year of cancer is a hard year. I told Kelly I felt tired or maybe depressed I can’t tell the difference. He said I would know the difference. So maybe I am just tired. And maybe it is just a sad thing to have cancer at my age or any age. Maybe in time there will be moments in which I will forget how sick I am.

Today I feel a huge sense of guilt and shame for not being able to put my “cancer” away. I want my kids to have memories of me being happy and relaxed. Not anxious and sad. Before seeing myself on film I thought I was happy. But now I think I am more unhappy than I had imagined. I know that I sit around with downcast eyes much of the time. I don’t know why I thought I was handling all this so well. Maybe I am not.

{I am going to say that I do not want to take anti-depressants. I think I am just feeling blue. But I don’t think I need medication. }

Please come to the Meeting*

Friday, April 11th, 2008

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Tomorrow

Saturday April 12th

from 1-4

at New Life Presbyterian Church

425 E. Roosesvelt Blvd. (215-324-4566)

Child care, snacks and drinks provided!

Dr. Dan Gottlieb is going to help me facilitate, and we’re hoping to have several things come out of this meeting.

1. The first being that we all get to meet each other. Every person Andrea has ever introduced me to has been lovely and kind. I really look forward to meeting y’all.

2. The second is breaking down all aspects of helping out into small manageable tasks. We all have busy and sometimes overwhelming lives of our own, and feel bad that we can’t make and deliver dinner for 8 on a week night. That’s okay. What we want is what you can do easily and joyfully to help. There are many different ways to help, and we want you to sign up for something that you’d enjoy.

(If you can’t make the meeting, you can still contact me and I’ll email you directly.)

3. To break up into small “committee’s” that will address different area’s of helping.

From people who would volunteer to help Baily start a scrapbook for herself and Clay, to people who would like to raise/donate $ to the babysitting fund, to people who could help get the Education Fund for the kids set up, to entering and helping to keep track of all the data for people who want to help.

And that’s it. Thanks to everyone who’s helping me to get this organized, and to everyone who can’t make it but contributed in other ways. Your help is invaluable.

xoxo

Naomi

*I blogged about this last week, and haven’t had enough time to call all the people on my list, but in case you missed it, we’re having a large organizing meeting for all the people who help or want to help out Andrea and the family.

Sunshine and flowers

Thursday, April 10th, 2008

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The week seemed to just fly by. It was hard to carve out the time to sit in front of the computer. I am very aware of how I spend my time. It is difficult to tear myself away from the kids or Kelly or a quick phone call. Today is the most ideal time. I have spent the morning and afternoon with Kelly and he is pleased to be watching a show about choppers. I am pleased to have a bit of stamina to gather my thoughts. The kids are not home from school and Clay is with Jenny. The spring breeze is coming through the open windows. I love the 8 nice days we get before summer here in Philly. I will try to appreciate them instead of just complaining about the awful weather in this part of the country.

Today was my weekly with Dr. Demichele. I am not really having much stomach pain or any of the bad symptoms associated with this chemo. Actually, I am just very very fatigued. It is possible that I will develop some of the symptoms later. Dr. Demichele and I spoke for awhile. My test for Her2 status came back negative. I will not be getting the medicine herceptin. Which is a bit disappointing because usually with cancer as aggressive as mine women are Her2 positive and can get a medicine that seems to really halt the progression of their disease. After feeling my neck she felt that the tumors seemed smaller and softer. Which is good. But after looking at my scar, from my mastectomy, she is concerned that I may have skin mets on my chest. Which is bad. She looked visibly concerned. Now I know I am stage 4 , but Lord can I just get a break? Can just one thing get better without something else rearing its ugly head?

We decided that the day she gets the results of my next scan (May16) she will call me. Basically, I do not want to wait for a week for results. If there is any progression in 6 weeks I will be switched to the 3 drug regimen. For now I am trying to stay in the moment. Maybe the Xeloda will work. But I have been saying that for nearly a year. It is hard not to be a bit of realist. I know that there are people who are just super positive about their treatment. I am not negative. I just recognize that at this point with how quickly it has progressed it may be hard to get under control. I sometimes feel very bad that I am not all sunshine and flowers. Honestly, my feeling is just that it is what it is. I can not be bothered to just wait for chemo to work to be happy. I am happy despite the fact that it may never work at all.

Kelly and I spend more time talking about my disease now. Or what will happen if I don’t make it. Not because its what we want, but because if we didn’t we would be wasting time. I think we feel very close and engaged. I think we both recognize that it is essential to be very protective of the time we have left. I am trying to spend every single day with my kids and husband and friends. We take nothing for granted. Kelly hugs me all day long. The kids do to. We just embrace as we pass each other. I wish I had more energy. I am sleeping about 2-3 hours during the day. I go to bed early too. I am on the same schedule as my toddler.

But it is not so bad. I am hoping that getting my blood sugar under control will increase my stamina a bit. And I know I need to try to get more excercise. I have lost a lot of weight but also a lot of it was muscle. Its funny because I think things like I do not want to have to work out…but I hate being so weak. No motivation. Maybe the new spring weather will be enough to get me moving. We should hope. I hope that you are not bummed out by reading any of this stuff. Honestly, I feel like I am just keeping it together living day to day. In the moment. What else can I do? I take the medicine. I love God. I pray. I spend time with my loved ones. I apologize that I do not write about how “super positive” I am that this chemo will work. I just focus on what I have control over instead of what I don’t.