The tumor just got bigger and more painful and they made me wait longer all for an extra 2 to 8 months. This isn't even the trial I wanted to do. The trial I want to do is suppose to be FDA approved end of this year. I couldn't wait any longer for nothing to be done and I went back to my own oncologist. But first I had to tell everyone that I was quitting the trial and that isn't easy, especially to my son. Nick wasn't very happy with me at first and I do understand his frustration. He thinks it's these new trials or death, it doesn't have to be that way I told him, look at this past summer, he wasn't buying it. He still isn't buying it, but he now understands that it has to be something I am comfortable with. I think he heard "quality over quantity" concerning life for the first time. Radiation starts on Monday, all the prep work has been done and they tell me the individual treatments should take less then ten minutes each time. A little skin irritation is all that I should have to worry about and they gave me some lotion to deal with that. Finally I am "home" getting care and getting help. Now we just have to pray it works. If not I am not worried, I still have my FDA approved drug coming end of the year and I can get that at home as well. It looks like I will make it to Sam's wedding .......I have to make it to Sam's wedding!!

Should these trials that I am going for as a last resort not work for me, I sit here and think when I am not scared to pieces, I really have no words to leave for anyone. Nothing of any great importance. In essences I was just a struggling wife and mother of four who feels that she did a pretty good job in the end. It takes an increase of pain meds and a nice calming xanax just to get through tonight. It's been a bad night. A night of wondering what death is like. A night of telling God that I don't want to die. A night of crying to my sister through the phone that I don't wanna die. They tell me I have four to six months before the cancer takes over my body and that's it for me. I tried to look on the bottom of my foot for an expiration date but I couldn't find one. All I know is how I feel and that's weak, tired, in pain and feeling these tumors getting larger very quickly. So when does this trial start? I don't know, it's all about sitting about waiting to hear from them until you are so frustrated you give up on the whole deal and go back to your regular oncologist and beg her to make you feel even the slightest bit human again. No wonder there is no cure for this type of cancer.

The scan showed the cancer has returned. Not as bad as I had thought, one mass in the back draining into the lymph nodes causing a large mass in the right groin lymph nodes. There is still a significant amount of pain in the lower spine so doctor has ordered a MRI, increased pain meds and is hoping it all goes away. I'm fine as long as I keep flat, but that makes it a little hard to live life, dontcha think? She has also ordered some radiation to hopefully shrink the tumors which should help with the pain. I have the best oncologist in the world! She is also going to check with the trial that we were thinking of going to to check on compassionate use of their drug so I can receive treatment right here at home instead of Chicago. Now that is a win win for everyone!!!

I'll take prayers from anyone who wants to offer them. :)

Not sure what happened in a matter of a few weeks but I now have in excess of five nodules on my back, a couple that are very painful. Not to mention pain in the lower spinal canal. They did an x-ray in the ER the other night when I couldn't get control of the pain, no cancer showed but they told me more than likely the pain was a sign of cancer in the spine and it would take a scan to show it. Hopefully I can get a pet-scan before my appointment on Wednesday of this week to check for sure. Dang-it, it was a great summer of building up strength and getting so much done around the house, celebrating my fiftieth birthday with family and just enjoying life without cancer. Wondering if miracles happen twice in ones life?

Went to the doc. today and first she showed me my PET scan from January and said to look at all those black dots all over my body. She said those black dots are cancer. I was shocked when I looked at it that way, there were a lot of black dots. Then she flipped over to the scan that I just had on Monday and said now look at all the black dots on this scan. I said there aren't any and she smiled and said you're right, there aren't any!! I am in the 20% that the chemo is working for!! Woohoo! So it's continue with the chemo until I either become toxic to it or the cancer doesn't respond to it any longer. Of course if my peripheral neuropathy keeps acting up she is going to find a different chemo or some other way to treat me. How much you wanna bet my PN is NOT going to be acting up?!!? LOL Give me drugs I will survive. I was in shock at first when she told me, it took a while for it all to sink in then I was flying! Thanks for all the prayers, I truly believe that is what got me to this point! Keep em up, I am not outta danger just yet, but I will make it to my daughters wedding!!

When you haven't lost your hair, when you haven't lost a ton of weight, when your skin color is normal, it's hard for most people to believe there is anything physically wrong with you. This also makes it easy for some to put on their blinders because it's how they cope.

On the other hand, you know there is something wrong because you can't stay awake for long periods of time, you have these intermittent pains,you have no appetite, nothing tastes good, and deep inside you have this feeling of impending doom. That's the hardest one, that feeling of impending doom. It's the one that won't even allow yourself to pretend that nothing is wrong. That's the one that makes you face up to it all. Especially at night when everyone else is sleeping and you lay there wide awake. Everyone likes to tell you that you have your days and nights mixed up and you just nod and say probably, but you know better. You know that it's at night when all those fears come to taunt you. They love to come and play games with your mind. They ask you a million questions over and over again. What day will it be? What will it be like when it happens? Will you be able to go with as much grace as you hope to? Will my children suffer or will they find relief in my passing? Will it hurt? Will I cry? Will I smile? It is then that you can't listen to yourself any longer and you go online and play a game or read what everyone had to say that day on facebook. You do anything that has to do with life and living and normal that you can just to make yourself feel alive! Anything to remind yourself you are still alive!

I have my first repeat Pet scan since starting Chemo on the 28. That will tell us if the Chemo is working or not. I have an appointment with my oncologist on the 30th to find out the results, I'll be posting after that.

Does anyone know how to die? On one hand I feel like I should be laying down and taking it easy and conserving my energy. On the other hand, I feel like I should be off making a name for myself. Doing something special that people will remember me for a time to come. Somehow I don't think you get that from playing games on facebook. Is facebook really the way to go? I can see it now, headlines read, "Women found slumped over computer with face-book Farmville on her computer screen"! Not really the way I was wanting to be remembered. So what to do? I have been perplexed with this question for a few days now. Do I even have the energy to volunteer some where? Yesterday was the last day of my second batch of chemo, so today I am pretty drained, so that answer today is no, but other days, that answer might be yes. I have been wanting to volunteer with rocking babies at St. Joseph's Hospital here in Milwaukee. This is where the preterm's are born. They just need your love and body heat and believe me, I have a lot of body heat to share with them and God knows I love babies. Some where on this messy desk is their number, I looked it up before all this came back to greet me again. This being cancer. I bet I threw it away, thinking they wouldn't accept me into the program. Well, I can look up the number just as easy now as I did before. There, I left a message, I can't do much more than that. The least they can do is turn me down. Not sure if this is the answer, but it feels right to me and I guess that's all that matters. I refuse to lay down and wait for the hand of death to come over me, if it wants me, it's going to have to find me and then it better be prepared to chase me, with me laughing, out of breath, all the way........

Sitting here waiting for the effects of the next round of Chemo to start. This time I have a pretty good idea of how to do this, so maybe I will be able to beat it this time around.

I have had a rough couple of weeks it seems. I am sure when I am at the end I will look back and laugh at myself and that statement. Lots of back pain which my husband has been a great guy and given me lots of back rubs. Those rubs don't do much for the pain, but the feeling of touch is so important that it helps to take some of the pain away and he feels like he is doing something to help. I can't imagine how it must be on his end, watching me and not knowing how to help me because I don't have a clue how to help myself. I finally gave in and went and talked with the nurse at the office and she explained to me that I wasn't taking my pain medicines the right way, all to avoid being to groggy during the daytime. The funny thing is, I am now taking more medicine during the daytime and my pain is much better and yet, I seem to have more energy. Gotta love it when a plan comes together. I guess this is why they tell all medical personal not to treat yourself or another family member, because you are just to close to the situation and can't see the whole picture. Not to mention I got my painful arthritic knees injected as well and while there (this is at the office I use to work at) I was talking to Al the PA who was doing the injection and told him that for the most part my pain medicines were doing the trick but that like most people the narcotics wake me up in the middle of the night. His suggestion, take benadryl with my last dose and wow, I get to sleep all the way through the night. So now I have my pain under control, my knees can get me up and down the stairs and out of a chair, I am getting sleep and life is good!! It's been a long time since I have felt this good. Thank you God for this blessing, I will take it and run with it!

Enough rambling for one Saturday morning. One thing I have to say and that is Thank you, to everyone who takes the time out of their busy lives to stop and think of me and sends a card. I can't tell you how wonderful that feels to know others are thinking of me and praying for me. Please keep the prayers and good thoughts going...they are working!! God Bless!

What a great last couple of days I have had! Oh, I hate to even be this happy this soon but even if this isn't a cure maybe a set back of growth of cells? My first Chemo ended a week ago and I feel so good, is this how it works? I haven't been to the doctors yet, I go next week but I feel almost back to normal. I am in love with life again! I was always one of those strange ones who loved a mess to clean, guess that's why I had four kids but to stand back afterward and just admire your hard work was pleasure to me. Yes I know, most would say I needed to get out more but I truly am grateful for my home and my family and I feel a pride in all that. The reason for all this chatter is, I have energy to clean my own house! Get to all the places the house cleaner misses, which is many!

Even though I am feeling so good, I am still being ever realistic. Melanoma is not a disease that is cured! The 20% means it will have an affect on your tumors, causing them to either stop growing or stop the growth of new tumors. Cancer is a tough little cookie, it finds a way around most Chemo eventually. So I am buying time and for that I will be grateful! Thank you God, I will take whatever you give me.

I am living on milestones, first is my daughter Sam's wedding next year August. I will make that, I have promised her. Not to worry, I am not a cruel Mother, we have talked about me making it in another form. I can get in the middle of everyone's dances that way and hear all the conversations. They complain about the wedding, they somehow dump their wine. Oh no. Let's see, after the wedding then it's the babies I have to wait around for. They better hurry with school and getting that first job! Just as long as it's not all backwards and it's babies and then wedding! Of course then I have a graduation next year from college I have to be here for, good job Nick! So I have so many milestones to wait around for that I will be here for a long time. But remember, I am still realistic! ;)NOT!

I really had no intentions, timetables or time lines when I started this. It was just a place to let loose in words. Knowing my kids are reading this sometimes makes that harder to do. Makes it harder to be totally honest. That is one thing, I promised them throughout this whole process, to be totally honest with them. I think I have done that so far, even when it's been absolute pain for me to do so. What mother wouldn't want to spare her children pain? Especially when Mom is telling them one thing from the doctor and everyone else is telling them something completely different? I hope everyone else is right, Oh how I hope it, but who do you believe? The one who sees this everyday of her life or the one who loves you and doesn't want anything to happen to you?

Well, I've dealt with my big bad monster for this month. No, I am not talking about my period. Already dealt with that beast! Talking about Chemo!! I feel like a drum roll should play when I type that word out!! It wasn't as bad as I thought it might be. Friday, the first day, was pretty rough, retching wise, but then I learned, don't eat a thing, absolutely nothing before you take that pill. Then life is not so bad, but life is going to be much better today when I don't have to take that pill at all! I only take the Chemo five days a month, then rest for 23 days then five days and so on. The weight loss I feel from not eating is not so bad either. So often the pills I take for my peripheral neuropathy caused me to gain so much weight, it's nice to have one that has the opposite effect for a change. I just wish that I didn't have to take it, which should go without saying, but you never know...

Now is the time to sit back and think of those little capsules loose in my body doing good and fighting danger for all the world to see so the words of those who love me can then out weigh those of the doctor who sees it every day of her life at least for my kids sake! Please God, for their sake.

I went to see my oncologist yesterday. It was a follow up after my MRI of my brain and spine. She is such a chipper little thing, considering the line of work she is in. I just love her to pieces! My MRI's showed no cancer in my brain or spine, so that was good news. Then it was time to take care of business. She told John and I that she would like for us to fill out a Power of Attorney for Health Care. This took me back a tad and caused me to ask a question that my son Nick had been asking me to ask. What was my prognosis? She didn't want to answer the question but I told her I knew I wasn't getting out of this alive so just be open and honest with me. She looked me in the eye and said, three to six months, up to a year. Nothing like a punch in the gut to make it all real.

I start chemo tomorrow. I'm a little nervous about it. Not sure how my body is going to react to this little pill that could change the design of my life. Can I lay there and imagine that the big monster is in my body eating up all the little cancer cells like you see on TV? Is it like a video game? Does it even matter weather I take it or not? I'm going to give it a couple months try and see what the test show after that, if no change then why let it make me miserable?

I'm not afraid to die, I'm just going to close my eyes and sleep a long peaceful sleep. What I worry about are my kids left behind and my other family and friends. It's going to be a hell of a split for my kids, I have kept them on a short lease up to now. I have kept them close to my heart. There is no love like a mothers love for her children. But I will leave that for another post...

Don't mourn me yet, I'm not gone yet. I don't know why I think I would be appropriate for a miracle, but then I don't get to decide now do I?

The Continuation...January

My primary doc sent me back to my surgeon for that little lump on my chest wall "and while you are there ask him about that little lump above your belly button that we think is some kind of abscess". My surgeon ordered a PET scan which lights up when the radioactive dye they injected in me attaches it's self to cancer cells. Dr. D called me back and told me I lit it up like a Christmas tree. Many tumors found within the fat layer of the skin with more small tumors, which is the normal progression of Melanoma. Back to surgery to biopsy that lump on my chest wall. When I came out of surgery that lump on my chest wall was still there but the one on my belly was gone. Doc wasn't in the operating room and I just asked why he didn't do that lump and they kept saying that he would talk to me as soon as he was done talking to my family. I just told them they might as well tell me it was cancer, I already had a pretty good idea anyway, they told me. An hour later I left the hospital laughing. Why not, what good is crying going to do?? I'm not saying I didn't have my days of crying and I still do. My poor brother Tim got the phone call telling him how scared I was with me crying. I can't imagine how I would have handled that if I were on the other end, he handled it wonderfully. I have two wonderful friends, a married couple who are just a phone call away no matter what, they have been a God send. Chuck and Cali (Carol) I love you both! Cali did a wonderful job of helping me search the internet for studies or trials throughout the mid-west when my new oncologist (who I love to pieces) told me that a trial was my best hope of surviving. They traveled from Chicago to Milwaukee for doctor appointments, Cali took notes and kept all my records in order because I was just lost. When we did find a trial at Chicago University, they both came with me at the start or when Cali had to work Chuck was my taxi. It's hard for me to ask others for help, I'm the one who helps others, they took this burden away from me. They didn't give me a choice. But the trial didn't turn out as planned, I guess you could say I was voted off the island. My cancer cells didn't match what they were looking for. Not to mention, as easy as these two people made my life, I was tired, tired from the cancer, tried from not eating due to lack of appetite, tired from being away from home. I was exhausted! This was my out, my way to come back home and roost.

I am now going back to my own oncologist and finally some kind of treatment is being planned. I am just waiting for my first bout of chemo in pill form to be approved by my insurance. I spend my days laying on my couch in the family room, my back hurts if I am up to long, it hurts now from sitting here. Dr. S, my oncologist said after the MRI of my spine on Tuesday and the MRI of my brain due to headaches, if there is a tumor that is big enough to be causing the pain in my back they can do a bout of radiation. The chemo on it's own won't take my hair away, but mix it with radiation and it will. Sounds like I will have to find some fancy doo? rags to replace my missing hair but at least the pain will be gone and that means less pain pills. We can save those for later when they will really be needed. I know what I'm up against and it's OK for me, I just worry about my kids as any mother would, I want to protect them and shield them. We joke a lot, it's the way we do things around here. If I don't get my way, I see nothing wrong with pulling the "c" card. ;) Not to mention, I think puking gets a bad rap. I told my girls I want a pretty puke bucket.

Ok, my fingers are wearing out...incase you didn't also know, I have peripheral neuropathy. It's a nerve disease of the feet and hands that causes these areas to become numb and yet have very painful sharp pains or pins and needle type feelings all the time. It's not fun, but it's life and I've had it long enough now that I'm use to it for the most part. I am thinking cancer trumps this. More another night.

One more thing before I go...as the weather warms and we wear less clothes, please use sunscreen. Please get those yearly checks from the dermatologist. Please don't allow this to happen to one more person....please~

The Beginning ...

I knew I had a problem but my Mother was dying and there was nothing going to take me away from her. It felt as if I had spent the last twenty years with only a few holidays and a couple more visits a year to spend with her and I wasn't giving up this time to try and play catch up in my heart. Cancer can be such a wicked invader in so many ways. We lost our Mom on June 8th 2009. Funny thing was, I had places to go and people to see before I could take care of business. By the time I finally made it to the doctor the mole on my back was not only itching like crazy, but I had to keep a band-aid it to keep it from messing my shirts. I never thought I'd be that kind of person, who would put this kind of treatment off for so long, like some women finding a lump in her breast and ignoring it for months on end. I think there was a part of me that knew all along what was coming and just didn't want to deal with it.

Found out on my birthday that I had cancer and I was seeing a surgeon the next day. (am I boring you yet?) Anyway, lets speed this up, first surgery on Aug. 12, 2009. They did a wide resection of my back where the mole was and since it had spread to my lymph nodes under my left arm, they took all those from me as well. But, I was cured according to the first oncologist I saw!! Since surgery was the main cure they had done their job and nothing more was needed, go home and live. Until he started getting feedback from all my other providers who were in shock that no chemo was administered. Then I needed to go get a second opinion in Chicago. Yanno, I never did like Chicago much, to big, to much....but now, it just leaves a bad taste in my mouth! I still go there, my son lives there, goes to school there and probably always will be there. Saw one oncologist who asked me if anyone had talked numbers with me,I just looked at him. He said, "You have a 65% chance of this coming back within 10 years and at that time there won't be much we can do". He recommended chemo that gives you a 20% chance of helping but he didn't have room in his clinic right at that moment. To bad, we had living to do, we were going on a cruise and besides, in 10 years, who knew what they would have available by then. OH well, we had a great family cruise end of December into the New Year and everyone had a great time. We forgot the word cancer in our vocabulary, except in the context of sunscreen. We were in the Caribbean after all and we were all a bunch of pasty mid-westerners.

Then came the truth about a small little lump I had been trying to forget about since mid December, on purpose this time.