So here it is... About a month ago my Pulminologist  found a cyst in my chest that he thought was scar tissue from  the surgery I had five years ago when the upper left lobe of my lung was removed. He said he didn't think I had anything to worry about so I went about my life and put off getting the 2nd cat scan he prescribed. It wasn't until about a month later when I was in pain and unable to eat or sleep that I finally went and had the 2nd cat scan... It had grown significantly. After quite a bit of crying and saying "why me" I got busy making  all the appointments  I needed to. The Surgeon that  preformed my lung surgery five years prior (Dr. Durban) was the first call. He could not see me until the following Thursday. Waiting was going to be agony. I called to see if I should get any tests in the mean time. After a few more tests that didn't look promising I decided I had to see someone as soon as possible. Because of my history with the leiomyosarcoma in my lung I then made an appointment with a specialist in Philly who is supposed to be an expert in the field of sarcomas (Dr. Staddon)  He also said that he did not think I had anything to worry about, he didn't think this was cancer. He was very interested in my case and sent me to see a Surgeon right there in Philly who said he could do a less invasive procedure. The procedure would be preformed through my neck and a portion of the cyst wall would be cut open to drain the cyst and a biopsy would then be done to see if the cyst was malignant. We scheduled it that day and had renewed hope that this was all going to be over soon... When I came back to NY I went  to Dr. Durban to tell him the news. When he looked at my tests he also didn't believe that it was cancer necessarily. He scheduled an even less invasive procedure than the Doctor's in Philly. I cancelled the other procedure and a needle biopsy of the cyst was to be performed on March 15. Again we had renewed hope, after all this is the 4th doctor that said don't worry it doesn't look like cancer...

Jump to bottom to see all Updates

Updates:

Today is Amanda 33 birthday, we all miss you.

Happy Birthday!

Two Years, we all miss you.

Today is Amanda 32 birthday, we all miss you.

Happy Birthday!

One year today, everybody misses you so much.

Today is Amanda and mine’s 3rd wedding anniversary.

Today is Amanda 31 birthday it has been real hard with out her.

I and everybody who loved her really miss her.

Happy Birthday Baby!

Words cannot explain my loss, Amanda change my life along with

the many others that were lucky enough to have met her. She fought

long and hard to beat this thing and in many ways I believe she did.

I have to pick up the pieces of my life with the most important one

missing she was my everything and without her I am nothing.

I will keep this website up in hopes it will help others in there fight.

"I am the luckiest woman I know not because I have this illness but

because of what this illness has made me see."
-Amanda in her own words-

"In the end, it's not the years in your life that count. It's the life in your years."

I thank you all who supported Amanda through this Bull Shit.

I will love you Amanda always and forever!!!

One of Amanda's wishes was for donations in her name

be made to Volunteers for Wildlife, Inc. Amanda was

a volunteer here and loved it.

3-04-06

Amanda lost her fight today

I will miss her so much.

2-19-06

Well the wait is over and, OK so it wasn't the news we wanted to hear. It seems as though this fight isn't over. My tumor has grown by a centimeter. This is obviously discouraging news but the doctors are hard at work getting us more options for my treatment. I finally feel like I have the right doctor working for me as he is a specialists in sarcomas and he is one of three doctors in the United states that is getting all the clinical trials first. I may be starting a new clinical trial soon. It also may be that  radiation or surgery are in my future as well. We will be discussing all of my options with the doctors this week. They did however seem optimistic that they can still help me in  my struggle to get better. I have been feeling stronger these last few days so I hope that continues. It has been a long time since I have felt like myself and each day I hope to get closer and closer. It is amazing, it has been over a year since I was re-diagnosed with this cancer and I am still able to think positively (most of the time). If I didn't think I was going to beat this I wouldn't keep updating my site with my good and bad news. This site will forever be a reminder to me of what I went through and the people who saw me through it. I love you all and keep those positive attitudes you know I will.

.

2-12-06

It is about 1:30 in the morning and the snow is coming down hard outside our window. Jason is sleeping soundly next to me but I am having a hard time sleeping. You see next week I am going for another CT Scan and I am really nervous. I keep telling myself that it is shrinking but the not knowing is so hard. Every ache and pain I think is that because of the tumor. My radiation pneumonia has flared up again and has had me out of commission since I came back from Philly (and the dreaded chemo treatment) on the 1st of February.  It is such a struggle to keep my breath. Everything has become a chore for me and I am getting so frustrated waiting for relief. It is hard  because I want to be that independent person that I used to be and now I rely on someone for every basic need.  Jason of course is the greatest. He never lets me feel like a burden (maybe a pain in the ass but never a burden Ha Ha). My mother and Father in-law have also been exceptional. They come over each day with lunch for me and on the days I am up to it they will take me out to the mall and wheel me around for awhile or to my Dr. appointments. Otherwise Jason would have to take off from work and we obviously can't afford that.  I don't know what Jason and I would do without them. Well I hope everyone has a nice Valentines day. I know that I will be spending it with the most amazing man I know. I am a very lucky women!

1-14-06

GOOD NEWS!!!! We have more shrinkage. My tumor has decreased in size to 7cm x 10.3. This is down from my last CT scan which showed it to be 8.3 x 11cm. I also seem to be tolerating the chemo better this time. No major sickness just  tired. My husband continues to be my rock. I am forever grateful that he has been sent to me. I believe that it is the power of prayer that has gotten me this far. Thanks to all that are sending their good thoughts and prayers my way. (somebody is listening)

1-4-06

HAPPY NEW YEAR!!!!

I hope everyone had a happy and healthy New Year. I spent it home quietly with my hubby. I am looking into this new year with renewed hope. I will receive a CAT scan tomorrow of my chest to see if there has been anymore shrinkage (keep those fingers crossed). I won't find out the details of the CAT scan until I go back to Philly on the 11th (I hate waiting, it's the worst). I am however feeling much better than the past couple of weeks. I hope this continues. Well I just wanted to give a little update hope all is well.

12-26-05

This holiday turned out to be great. I was able to go and visit with my In Laws and my sister with very little difficulty. It was great! I hope to start getting out of the house more and more as time goes on. We enjoyed a turkey feast at my In Laws and a beautiful fruity dessert at my sisters. I returned to Philly last week on the 21st of December and I returned feeling fine for the first day. Then it began to hit me. I spent most of the next day hanging over the toilet or a bucket but by the afternoon I began to recover. It was great however to feel almost like myself on Christmas day. Someone must be looking out for me up there. This year I got everything I wanted I was feeling good and I was able to spend it with the people I love. What better Christmas present is there. I hope everyone had as enjoyable a holiday as I did. Talk to you all soon.

12-17-05

It looks as though It is going to be a wonderful holiday season. As some of you know I have been having a rough go of it recently but things are definitely on the up swing. I received the news that my tumor has reduced in size from 14cm to 8.3x11cm. This is due to radiation alone and is the largest reduction since this all started a year ago. This has been really uplifting news at a time when things seemed to be at their worst. When I returned from Philly after my first treatment of Yolondis the bronchitis I had been suffering from turned into radiation pneumonia which has had me gasping for air for about three weeks. I am however beginning to gain more strength with each passing day. I no longer need to use my oxygen all the time and I am starting to get around better. I just recently began to leave the bedroom for more than just the lavatory. It feels great to do things for myself again. Although Jason still does so very much for me, he now doesn't have to carry me up the stairs as long as I do them slowly. I just hope this improvement continues. My faith is strong that I will eventually beat this cancer and be able to look back at it as a learning experience. I believe that it is all the support and love I receive that has brought me this far. You all give me the courage to continue to fight. Thank you all and I hope this is a wonderful holiday season for each and everyone.

11-20-05

Today is the first day I have felt strong enough to update my site. I have been fighting a bought of bronchitis along with a 103 fever as well as the after affects of 27 treatments of radiation. I have been having difficulty breathing for quite a few days but it seems to be getting better with antibiotics. I hope to be feeling more like myself by Thanksgiving. I hope I am able to enjoy the holiday festivities.

We went to Philly Tuesday to meet with the doctor that wants to put my in the new experimental study using a chemotherapy called Yolandis . It looks like I am a good candidate for the study and I will be starting my treatment on the 30th of November.

I have been really emotional lately but I am trying to remain positive. It takes a lot out of you when you are bed ridden for the good part of two weeks. I have finally started eating regularly so my strength is beginning to return.

Well I hope to be able to update the site more often when I am feeling better. So keep the good thoughts coming.

.

10-19-05

I am still here but it looks as though I will be returning home soon. I hope to be home as soon as October 31st. I still have radiation each weekday morning until the 31st. My husband has been here since the 16th and he will be returning home one week before I do. My mother is coming out to take his place and she will be flying home with me on the 31st. I can't wait to see everyone. It is amazing how long I have been here. My mother in law tells me that my pups really miss me. I can't wait to see them and the rest of my family and friends again. I think when I get home I will be feeling more like myself and less like a lab rat. It looks like I will be seeing a Dr. in Philly about my experimental treatment because the hospital that I am at cannot get their hands on it. In a way that is really good because I will be closer to home and the expenses won't be as bad.

Last weekend I was able to fly to MD and attend my cousins baby shower. It was so nice to get away and I wouldn't have missed it for the world. It was a great time and I got to see people I wouldn't have had I stayed in Illinois. My Aunt flew back with me and stayed a few days. It was so nice to have her here and she is a laugh a minute so she kept my mind occupied.

I am not looking forward to Jason leaving this Saturday but I know he has to return to work. He wants also to have the house ready for me to return. He is so good to me I can't stand it. I know most would find that I am not lucky but I feel as though I am the luckiest woman in the world. I get to KNOW how loved I am. There is no question in my mind about who cares for me and who doesn't. All I have to do is look at my email, think about those who came and visited, check my phone messages, or just think about the people who believe in me. I am the luckiest woman I know not because I have this illness but because of what this illness has made me see.

10-4-05

So not much news here. I am still undergoing radiation treatment each morning and I seem to be coping fine. My body is holding up well and I have little effects from the treatment itself. I am however extremely home sick. I miss my pups and family so much. Jason is still here in Illinois until Friday and My best Friend Jeannine will be arriving on Saturday to keep me company until my Sister comes back on Tuesday. My sister has made it so that I am never alone for long. I am so grateful to everyone for being so amazing. I am a very lucky patient. I see people here all the time by themselves and feel how hard it must be keep yourself on track here without help.

We are looking into experimental treatments at this time and my doctor thinks he can get a particular drug sent here for companionate use. This is a chemo drug that is supposed to target my kind of cancer particularly. All I know is that I still have quite a few options and that this cancer is going to have to work a hell of a lot harder to take me out. My appetite has returned and I am feeling healthy as ever. I even had them lower my meds today and they say that is a good sign. (of course it is) I hope lowering my meds makes me feel a little more like myself again. I have been feeling out of sorts lately and anyone who knows me understands how much I hate that. I can't wait until I am done here in Illinois I know as soon as I get home I can really focus on being me and living again. I miss everyone so much and can't wait to see you all again as soon as possible.

9-27-05

This has been an amazing week. I have been here in Illinois being treated and I am overwhelmed by love and support from everywhere. Jason had to return home for a couple of days to pick up some things as well as return to work. I am so grateful to his company for allowing him to return so soon. He is actually on his way back as I write this. He is somewhere in PA. I hope the drive is relaxing and that he is not rushing to get here because although I would love to hold him I feel very taken care of.

I underwent my third radiation this morning and I am feeling no different as of yet. I am not sure if that is because I am on such good meds or because the treatments take a little while to cause side effects. I however have not felt this comfortable since this all started 8 months ago.

Jason should arrive tomorrow and my father and aunt will be flying home late tomorrow evening. I think it will be great to have only Jason here for awhile. It is great to have so many others but at the end of the day he is always the one I look for. I believe completely that I have made it this far because of his unbelievable love for me. He is such a remarkable man and I am so lucky to have him in my life.

I miss my niece Taylor so much and wanted her to know how much she is loved. I can't wait to get home and play a little baseball with her. I talked to her the other night but I wish I could give her a hug and a kiss each day. She makes me so proud and I can't help but brag to all the people I know about her. I think they all must feel as if they know her because I tell them all so much. TAYLOR YOU ARE SO IMPORTANT TO ME AND I LOVE YOU SOOOO... VERY MUCH. I CAN'T WAIT TO SEE YOU XOXOXOXO!!!!!!!!!

Life is amazing it really shows you what is important you just have to be paying attention!

9-23-05

It has been ten days and I have very little recollection of the last week and a half. It turns out that I almost passed away on Friday night. My tumor had closed off almost my entire bronchi and my heart is pretty smooched in there. My whole immediate family came rushing out over the weekend. Jason said I was in real trouble. Thank god I can't remember much about it because I was told It hurt. I have been getting better since and I feel things are only going to be looking up. I will be here in Zion for the next six weeks or so for radiation treatment. I am taking complete advantage of all the hospitals facilities. I have been attending relaxation and healing imagery classes as well as acupuncture and massage for comfort. I love the hospital and the the people who take care of me. I feel so loved and thank god everyday for the miracles he has given to me. I miss everyone so much and wish I could be there with you all. Please continue to email me at anytime and I will try and write back as soon as I can. Keep me updated about the good news in your lives it will help me get through this tough time in mine.

9-13-05

I have been having a really bad week. On Sunday my back began to hurt because I had been coughing so violently. It even got so bad I would throw up. I thought that I would be well enough and was excited to go back to work on Monday but because of the vomiting I had to call in sick. It was really hard. I had been feeling so good about returning to work and here I was calling in sick in the second week.

Last night I was up all night with a sinus headache that also made me vomit. I woke up this morning so sore from all the retching. I am not sure if this is because I have a flu or if it is from the cancer itself. I called the hospital in IL yesterday and they said as long as I am not running a fever and am not dehydrated that I could wait until my appointment this Thursday. That doesn't do me much good right now though.

Jason took off today to take care of me. We leave for IL tomorrow and I am extremely scared. I will be getting some info on the tumor and although I don't believe it has grown I am still very frightened. I find out on Friday if it has changed.

Jason has been so wonderful and my Mom and my Sister took care of me this evening so that Jason could get out of the house and take some pictures. He says it helps him to clear his head. He is going through so much right now as well and although he was hesitant  I pushed him to go. I need him to stay healthy as well. So please keep us both in your prayer. I will try and update the site when I get more news.

9-5-05

It has been a tough couple of weeks. When I returned from Illinois for my most recent treatment I came down with a cold or something. I had to be brought to the emergency room on the Friday following my treatment. I was running a fever and had the chills. They told me that this could be very dangerous so I headed to the hospital as soon as I could. I was given intravenous antibiotics and Tylenol to bring down the fever. I was pretty sick but I couldn't stand the thought of spending another night in the hospital (I have had about enough of them) so I signed myself out with the promise that I would return if the fever came back or I got any worse. Things seemed to get better after that and I am dealing with the side effects of chemo as well as could be expected.

I returned to work on the 1st of September. It was a day of meetings and such. I was quite tired but I made it through. The children come in tomorrow and I believe I will have a better day knowing that I am there for them. They have an amazing way of making you forget about yourself and concentrate on them.

I am scheduled to return to Illinois on September 14th and I will receive a CT scan of my chest abdomen and pelvis as well as a bone scan. This is to see if the tumor has grown or spread to any other part of my body. Lets all pray that it hasn't. I am staying positive most of the time and when I get down I am brought back up by all the love and support I have been receiving. Thank you all for your words of encouragement you continue to give me reasons to fight.

8-20-05

I am returning to IL for another treatment this Tuesday the 23rd. I am not to excited about returning to IL so soon after my last treatment but the Doctors want it this way. Jason is not coming this time. He has already taken so much time off and his job has been so understanding. I asked my mother to come with me this time. We are going to fly in on Tuesday night. My appointment is on Wednesday morning and we are going to fly out that same evening. It seemed a little silly for Jason to take off when we were only going overnight. It is going to be weird without him. He has always kept me laughing even when I feel like crying. I won't get any news about the tumor this time because I won't be getting a CT scan until the next visit. They are trying to cut down on the amount of radiation I am exposed to. I will just have to hope that everything is going well and that the treatment is working.

I will be returning to work on September 1st in Islip schools. I am really excited to get back to the job I love so much. I ordered my wig last week and it is being cut and colored this week. I will soon look like a real girl again. I am quite anxious to try it on and go out without the stares. It has been hard dealing with ignorant people. It is really funny sometimes. I can understand when children stare in fact I kind of like the attention the children give me but adults should know better. When I see them staring they should at least smile not just stand there with their mouths open. You would think I had five heads or something. It is going to be fun to be normal again even though I may not feel that way.  I will update my website again when I return and am feeling up to it. I hope I react even better this time to my treatment and am back to myself sooner rather than later. Keep those prayer coming I need all the help I can get.

8-9-05

I am sorry it has been so long since I last updated my site. It has been a rough couple of weeks. We returned to Illinois on the 2 of August it was a tough ride. I was in pain most of the trip. When we arrived we got the news that it hadn't grown but it hadn't shrunk. They say any stop or slow in growth is good. (I think I may have known that)

My Pain resonates mostly in my back under both shoulder blades and down the length of my spine kind of forming a T. In previous months the pain would come and then subside but the whole month of July and into this month it hasn't.

I have been getting a new treatment during my last two visits to IL. I like it better because it is only a half hour infusion instead of a 4 day one. I was able to stay with Jason at the hotel after I received my treatment and we headed home last Friday.

This chemo has different side effects I feel less nauseous but I get the worst flu symptoms I ever had. I tried to explain how I felt and the best I could come up with was that I felt like a truck had hit me, run me over, and then backed up over me again. That lasted until yesterday and I have been getting better since.

I finally got the doctors to listen to what I felt was going on with the tumor. I had been getting the back pain at the same time each month and I felt it had to do with my hormone production. I asked them if their was a way to regulate or even stop my body from producing hormones related to my menstrual cycle. They didn't all agree with me that it would make any difference but they didn't see how it could make it worse. They gave me a Lupron shot to shut down my ovaries and uterus for awhile. They did express concern that this could shut them down permanently leaving me without the ability to conceive a child and I could develop osteoporosis . I simply said "I have to be alive to have children don't I, and as for the osteoporosis lets hope I live long enough to have weak bones". so they gave me the shot. Besides there's always adoption and I will load up on the calcium for my bones.  

I also had a port inserted under the skin of my left shoulder to make it easier to receive my chemotherapy. This way I don't have to go in and get a central line put in each time I receive chemo. It was a small surgery that they put me out for. It was the best sleep I got in weeks to bad it was only for an hour. My shoulder was sore for a couple of days but so was everything else so what is one more thing right.

I hope to keep getting better each day and eventually feel like myself again. (even if I don't look quite like myself)

I was feeling well today and was even able to go and do a little shopping with my Mom. I become quite tired because I just finished chemo on Thursday but I hope to become stronger with each day. The back pain is easing and I hope the shot that stopped my hormone production is doing its job. All I know is that I feel better at the moment and hope it lasts. Keep your fingers crossed!!!!!

This is probably the hardest entry I have had to write since I started this web site. We have had a major setback. The cancer has decided to grow to the largest it has been so far. It seems as though the chemo I was being treated with is not doing its job. I discovered something was wrong the last week of June when I started to experience pain in my back similar to the pain that I have experienced when the tumor had grown on each of the other occasions. After we arrived in Illinois on the 4th I was experiencing so much pain that Jason called the hospital to take us in early. They of course were very accommodating and started with pain management immediately. I was scheduled to begin chemo on the 6th but the doctor wanted to perform a CT scan due to the pain I was experiencing. We of agreed. After a couple of grueling hours of waiting for the results we received the bad news. It was a crushing blow but one I expected because of the pain I was in. The doctor then recommended that I go back to the hotel and to come in the next morning to discuss new treatment options. We returned to the hotel and basically cried ourselves to sleep.

The next morning after the doctor spoke with his colleagues he suggested another form of chemo. We asked more about surgery but the doctor said that he had already given my case to the head of thoracic surgery and he doesn't believe that it could be a successful surgery at this time.

We are continuing to keep the faith and believe that I will be able to overcome this hurdle. It has been increasingly difficult due to the pain and newly developing wheeze that has now decided to become part of the everyday struggle. I do however realize how lucky I am to have so many other blessings in my life. You have all made me feel so loved and given me so many more reasons to fight than I could have ever imagined. I continue to draw strength from those around me and the news of happy days to come.

6-29-05

It has been awhile since I updated the site. We are headed back to Illinois on the 2nd of July for more chemo. It is less time between treatments this time but the doctors want it this way. I am really not looking forward to spending the 4th of July at the hospital but I have to do what I have to do. I hope you all have an enjoyable holiday weekend and have a couple of drinks for me. (HeHe)

6-14-05

We arrived home at about 2:30am on Monday after Jason drove 14 hours with breaks only to eat and use the restroom. I of course slept the majority of the trip. We did however make a short stop and see Jason's Grandmother in Pennsylvania. She just so happens to live right off route 80 so it was nice to stop and see her.

It seems as though I am doing better this time. I have fewer symptoms from the chemo and we aren't sure if that is because of the vitamins I am taking or that I have just learned to manage the medications better this time. Whatever it is it's working.

Jason has returned to work but still calls me quite often to see how I am feeling. I have been resting a lot because the heat is making it hard to really get around. Jessica however took me over to see about getting a wig. Damn those things are expensive. Well I have to see about insurance and stuff before I decide. I will probably only wear it if I have somewhere fancy to go. A long black dress and a bald head don't seem to go somehow.

Thanks for all of your well wishes.

6-7-05

Ok I usually don't update the website so soon but I got good news today and I wanted everyone to hear it. The Tumor has shrunk! It isn't a great amount but it did get a few millimeters smaller enough to show that this treatment is working. Jason cried at first from sheer relief and I couldn't get the smile off my face. At least I am not going through all this crap for  nothing. All your prayers must be making an impression on the big guy.

Tomorrow I will be admitted into the hospital to undergo another round of the chemo.  Jessica is flying in tomorrow and will be able to help Jason with the difficult task of keeping me company. I dream of the day when I no longer need to update you on my ongoing health problems and can get back to the task of living my life. Love to all and keep those thoughts and prayers coming.

6-6-05

We arrived in Illinois this afternoon after a beautiful scenic drive through Pennsylvania, West Virginia, Ohio, Indiana, and finally Illinois. We took the Historic National Road for most of the drive and for most of the drive I forgot where I was going. Nature put on a light show for us last night as we drove through Ohio with thunderstorms in the distance. As they got closer we decided to sleep in Springfield Ohio. The drive today was only about 6 hours. Well needless to say I am not happy to be back but I am anxious to see if my treatment is working. Wish me luck!

5-26-05

We will be returning to Illinois for my second round of chemo on the 7th of June. I am certainly not looking forward to 12 hour infusions for 4 days. I will be admitted as an inpatient because my infusions are so long. This way I will have my own bed and TV and they can monitor me while I am being infused. I will also be receiving a port in my left shoulder into a main vein that will remain there until my chemo is complete and all scans are clear.

My sister is going to fly out and Jason and I are going to drive. Having a third person there puts less strain on Jason to be there every minute. He stays anyway but it is nice to know he can go down and get a cup of coffee without worrying that I might wake up to find no one there.

We realized last trip that driving might save some money because we won't have to rent a car while in Illinois. Besides the flight was very uncomfortable for me. We figure we can drive back with as few or as many stops as we want. It should also be more comfortable because I can curl up in the back of the car when I want to. On the plane and in the airport there is nowhere to lay down to rest.

Well as much as I am not looking forward to going back I feel that the sooner I do, the sooner this ordeal will be over. Keep the prayers coming that the tumor will be small enough to surgically remove (gone altogether would be nice too!) Jason or I will post more updates while we are in Illinois. Thanks to all. 

5-22-05

So I shaved my head today. The hair was beginning to fall out in large chunks and it was getting everywhere in my mouth, all over my clothes, and every time Jason kissed my neck or cheek he would come away with large amounts of hair stuck in his goatee. It was becoming more annoying than it was worth. Jason shaved it off in the backyard. We went out straight away. I think I have gone to more stores today than I have in awhile. The funniest type of people are the ones that try not to look, but you can still see them looking out of the corner of their eyes. I have been having a really great time with it. It is still at that stage where people aren't sure if I did this because I am sick or I just wanted to make a statement. (I think I am doing both)

We went out shopping for hats today but I have never really looked good in anything else but baseball hats. My Uncle took care of that when he bought me a Mets hat and a Yankee hat the other day. ( I bet that was the first time he has ever had the strength to buy a Yankee hat seeing as he is a diehard Met fan) To bad the Yankees beat them two games to one in the Subway Series.

Well I have been sleeping better the past couple of nights. It is hard when I start to think about things but I have been trying to put it out of my mind when I can. I went on one of those cancer chat lines the other night but it was a bunch of people doing the why me thing so I didn't stay on for long.  The best support has been from my family and friends. I have felt so loved during these past few months that I can't even express it in words. I am trying to post some new pictures of my shaved head so keep a look out.

Photo1    Photo2

5-17-05

It has been over a week now since I started chemo. It hasn't been as bad a one might think. Of course you wouldn't have heard me say that a couple of days ago when everything I even thought about made me want to throw up. I am dealing now mainly with fatigue on top of sleeplessness if you can believe that, as well as mouth tenderness. It hasn't developed completely into mouth sores but it makes eating and drinking a little challenging as if they weren't challenging enough already.

I am busy trying to put back on some of the weight I lost during the past week. It is hard however to put on the weight when you are following a strict vegan diet. The hospital has given me a lot of ideas on how to get all of the required nutrition while following a vegan diet. The problem is I hate to cook or even prepare food. Jason is of course a huge help but he is getting tired of cooking things that are really not that interesting to eat. On top of that we are trying to eat all organic which adds another level of difficulty to the mix. Thank goodness for Fairway a local market that sells just about anything you could desire and has a great deal of organic choices. I don't really miss the meat and cheese it is just that we are so trained to see a meat, a starch, and a vegetable on the plate that when one is missing it doesn't really feel like a meal, but the health benefits from a diet like this can really help with side effects of the chemo.. 

So I decided to cut my hair short. It looks cute and my hairdresser was so good about being careful not to pull or tear seeing as my hair is very fragile right now. I figured it would be less stressful to lose my hair if it were short. Besides Jason has been asking me to have it cut short for awhile.  Maybe we will post a picture of my new hairdo later this week. I should know for sure after the next round of chemo whether I am going to lose it completely or it may just thin I, guess we will see.

I would like to express to everyone how much Jason and I appreciate all of your support.. Your continuous words of encouragement brighten each day. 

5-12-05

We were able to fly home yesterday. It was a very long day. I was sick most of the flight and had to be wheeled in a wheelchair because I was pretty weak and could not walk the long distances between gates. I felt a little weird on the plane because I had to wear a hospital mask to protect me from any illness someone around me might have. Because the chemo reeks havoc on your immune system a common cold could really do a number on me. You should have seen Jason shooting dirty looks at anyone that dare wipe their nose in my vicinity. He is my night in shining armor.  I kind of felt bad for the guy who had to sit next to us. He kept looking at me probably wondering what terrible illness I was carrying and was going to give him. Jason offered him the pretzels I didn't open and the fear in his face as he refused them gave me a chuckle. (Is that mean?) I finally had to say to Jason loud enough for the man to hear that I had more to fear from the passengers on the plan then they did. The gentlemen next to us seemed more at ease after that.

Well it is so great to be home. I was so excited to see my puppies and apparently they were very excited to see me as well because they peed all over the place when they saw me. (Thank goodness we knew enough to greet them outside) 

I am in pretty good sprits today and am feeling less nauseous than the day before. I hope it just gets better from here. I still have all my hair but it is getting thinner. They pumped me full of 3 different types of chemo drugs and each one says that they cause hair loss. Jason says that I should be happy at least mine will grow back his won't. They say that it usually is all gone by my second round. We are going to get matching Yankee hats (sorry Uncle Jerry) I think I might look cute. 

I want to tell you all how much I appreciate all the love and support I have coming my way. It has really made this battle easier. I Thank god each day for blessing me with such special people to know and love. 

5-8-05

I have been in the hospital since 5-5-05 they have pumped me full of all sorts of things that of course make me feel sick. I have dealt with most of them pretty well but as they add more the sicker I get. I am getting out today and because of a change in treatment plans I should be able to go home this week. I will of course have to return in 3 to 4 weeks for another round of this. 

5-3-05

Today I went into the simulator (sounds like fun huh). I didn't get to fly a plan or anything cool like that. In the simulator they plot out the points where they will attack the tumor with radiation. It was a lot like a cat scan (of which I have had many) so it was no big deal. The doctor is very surprised that I don't have more symptoms than I do seeing as the tumor is so large. He is afraid of the pressure it is putting on my aorta. He says he is surprised I am getting around so well. We even went to the Milwaukee Zoo on Saturday and the Chicago Zoo today after my procedure (with many stops to rest I must add). It makes me feel better doing things. It helps me to forget my troubles, if only for a short time. Oh yeah I now have 4 tattoos (no I didn't run out and get a tattoo from a tattoo parlor) They put these little tattoos on your skin so that they can target the radiation. They are permanent but are no bigger than a freckle, but now I can say I have multiple tattoos (aren't I cool).

It doesn't look like I will be coming home anytime soon unfortunately. I am going in for radiation on this Thursday and hopefully Chemo will start soon after.  Because I am getting radiation as well as Chemo I have to stay in Illinois until the radiation therapy is finished which will probably be 5 to 6 weeks. This sucks obviously but I really feel like this is the right place for me. What is 5 to 6 weeks when it could mean the rest of your life right. If anyone would like to reach me you can email me at the address at the top of the home page. If you want to talk personally email me and I will give you my cell number if you don't already have it. I love getting email it keeps me busy.

Well that's it for now. Keep sending the love because I can still feel it even in Illinois.

4-28-05

We are here in Illinois at the Cancer Treatment Centers of America. Today we got some bad news along with some good. We found out that it has not spread. My bone scan, Muga scan, blood work all came back good. The bad news is that the tumor has grown. It is now 11cmX7cm up from 9cmX6cm in February. The doctors feel treatment needs to begin ASAP to prevent the tumor from doing any damage to the organs it presses on. Surgery however is not an option at this time. the tumor is to large to get clean margins. Chemotherapy has been ordered for next week and I hope to start Monday or Tuesday.

Here at CTCA the first time you receive chemo you must be an admitted to the hospital and stay until your first round is complete. This means I will not get to see my sweet puppies for another week. Hopefully all will be well and I will be able to travel and go home sometime next weekend. I will then have to return here in 3 to 4 weeks for my second round. This will go on until the tumor is small enough to be surgically removed. I will then have my surgery here as well.

This place has made me feel so comfortable with the treatment they have prescribed. They treat the whole person mind, body, and soul. They provide counseling, nutritional support, guided imagery, vitamin and herbal supplements, I believe I am in good hands and will make a full recovery. If you would like to see the facility and learn more about it please click here.

4-21-05

We have been keeping busy with Doctors appointments this week. We had an appointment at North Shore on the 19th but just like everything else in my life things didn't go my way. It got cancelled because the doctor was out sick (convenient for the doctor to be out sick on the nicest day of the year so far.) So after some arguing with the scheduling department we were rescheduled for Yesterday 4-20-05 at North Shore University Hospital to talk to the Oncology department. They seem to think Surgery is my best option at this time but didn't give me any idea how that will play out in the long run. My biggest worry is that it obviously came back this time what are the odds of it returning. (I mean I only have so many organs they can cut into.) Of course they can't give me any answers to these type of questions. I am beginning to wonder if they will ever have any answers for me at all.

Today we went to Sloan for the Upper Endoscopy and got some good news. The cancer has not invaded the esophagus making surgery an even more promising option. We are still going to Illinois. Hopefully they will be able to give us more cut and dry answers. If not at least I will feel as though I have exhausted all of my options before going under the knife. I hope to come back with a better understanding of my condition.

This has been an interesting journey that seems to just go on and on. I hope to have better news the next time I am able to update this site.

Thanks to all who have signed my Guest Book. It means a great deal to me to see how much support I have been blessed with.

4-14-05

I changed around the home page so that the most recent updates appear first.

I also added some new photos to my photo page take a look.

4-14-05

3-31-05

Another day of testing at Sloan. Had a Trans Esophageal Echo and a Echo Cardiogram. They determined that the mass is pressing (not intruding) on the left atrium of my heart practically closing it off. My heart however seems to be functioning fine and they don't believe that it has done any damage thus far.

I have decided to think about happier times in my life to take my mind off what has been going on . I am extremely positive and believe with all of my heart (even the closed off part) that I will beat this.. If you would like to share in the more positive times in my life see the photos link at the top of the page.

3-29-05

So we didn't hear what we wanted to hear. We heard a whole lot of the same thing. Chemo, radiation and than surgery or the other way around. It is amazing to me that we are now going on our third month and still have no definite answers. Well like so many people say "The doctors are only practicing medicine" .

We were told that surgery might not even be an option due to the placement of the mass and the pressure it is putting on my heart. We asked a lot of questions and got very few answers due to the rarity of my case. (Well you all knew I was unique but this is ridiculous!).

My case is going to be reviewed by what they call a "tumor review board" where a lot of doctors with a lot of degrees get together to look at my scans and tests to decide what to do next ( I feel so special!). My case will be coming in front of the board this Friday or next. In the mean time more tests have been scheduled.

So here we are at about the same place we were last week. We didn't hear much in the way of options but we did hear however the possible side effects of chemo. They include the usual: hair loss, nausea, and because of my age (they acted as if 30 is old) probable sterility. This side effect seemed to effect me the most. It is funny how even though you might not be sure you  want children, when the option is possibly going to be taken away from you, you are immediately consumed by grief. I try and keep the most positive outlook on this as I can because I am convinced I can beat this thing whatever it may be.

    Please keep me in your prayers as I keep you all in mine.

3-21-05

I wrote this essay after my first experience with cancer. It is even more relevant today. It amazes me how much emphasis is placed on our appearance and how little emphasis is placed on how we actually live.

CLICK HERE TO READ

3-18-05

Thanks to all of my family  YOU ROCK!!!!!

I think positively most of the time and when I don't I call on you for courage.

Thank you to my loving husband who always reminds me of how much I am truly loved.

3-17-05

Made a lot of phone calls trying to get an appointment at Sloan Kettering.

My appointment with Dr. Mary Louise Keohan at Sloan is on March 29th.

3-16-05

Bad news the needle biopsy came back positive for malignant cells.