MRI Results and Trial

The radiologist found a 3mm questionable area in my right frontal lobe. They don't know if it is cancer or a blood vessel. So, for the time we are going to monitor it. If it grows or I start having symptoms then we will look at radiation.

The study has approved my participation even with a possible Brian Met as we are not actively treating it. I should receive the consent form later this week, and someone from the study will call to go over it with me. They will then contact my insurance and make sure they will cover all standard of care treatment while on the study.

With the study I will have to be hospitalized on day 1 for 36 hours and after that a week later for 24 hours and again the 3rd week. This is so they can do specifically timed blood work. After this I would have a doctors exam and blood work every 28 days.

Please pray this study will work and my cancer will respond. Also, pray the spot in the brain goes away as well. The chemo in the trial does cross the blood brain barrier so if it does go away we won't really know if it is cancer or not... But I will just be happy for it to be to gone.

Pleas pray I do not have any drastic side effects and that my body can handle the side effects known to come with the drugs.

Thank you all

Update...

Sorry it has been so long since I have posted an update. I have a few places I put updates and didn't realize until today I have neglected my blog!

I did start TDM1 the beginning of March. After one treatment I had an amazing response to the drug. My tumor markers dropped drastically. However, I had a physical reaction as well. I had this horrible pain in my right abdominal region. Pain medication hardly put a dent in the pain. I waited to go in though, because I was having a fundraiser that week and didn't want to miss it. The day after my fundraiser I went to the ER and found out it was my gallbladder. They thought they were going to have to remove it, but the following day the pain began to ease and after more tests we found it was healing on its own.

I had this reaction again after the 2nd dose, and again they hospitalized me and thought they would be removing it. The surgeon felt we should give it more time and it again healed on its own. I was very thankful for this. The good news continued as I had a PET scan after this and the tumors had shrunk drastically. They saw no cancer in my liver, which previously had been covered with tumors. My lung still lit up some but it had gone down some. The lymph nodes were all clear as well. My oncologist said she felt it was almost a complete response... but she was assuming the lung may not be cancer. However, I know and now she knows that was a wrong assumption.

I continued on this drug until almost 3 weeks ago. A couple months ago my tumor marker started gradually raising. Not by much, but enough to worry me. So, I had a PET scan again and this time it showed a few lymph nodes and more cancer in the lung. This of course means I have to start a different treatment as the cancer has built up a resistance to the TDM1, I was so extremely disappointed as I was so praying and hoping this drug would cure me. I had such a miraculous response initially and I did what I have tried not to do but keep doing, I convinced myself I could be cured and be cancer free. Although I know the Lord can cure me I also know He hasn't promised me that and He can say NO! When I get complacent and believe this might be it I am always disappointed when it comes back or grows.

I don't know if it makes any sense, but by remembering that my cancer may take my life in the near future I do not get so upset when I find out it is growing... I am still upset but it doesn't hurt as bad. When I not only have faith but complete belief and hope that I may be cured I am much more distraught to find it isn't working anymore. I, of course, am always upset to think that I may die at anytime from this cancer, but knowing this, it is easier to keep in in the back of my mind and separate from it. I don't spend too much time talking about it. I try not to think about it very much. I guess I pretend a little bit that it isn't there all the while knowing it is... I know that sounds weird but it works for me. If I don't get my hopes up they can not be dashed again and again and again.

I have agreed to be a part of a trial. If my brain MRI is clear and the insurance approves I will begin this trial in the near future. I will be on an oral chemo I was on before and another oral drug that is new. It is only a phase I trial, which is rather scary, but my Oncologist doesn't have very many other options for me. This was actually the only one she presented me with until I asked for other options. She only has 3 other chemo options... this is very scary to me.

For those of you who pray for me and see me at church or other places, please know that I am not avoiding you or do not appreciate your prayers and encouragement. But as you may not know what to say to me I also do not know how to respond to you besides saying thank you. I typically get all my tears out on my husbands shoulder when I first find out and then try to separate from it so I don't have to be depressed and sad and crying all the time. When you tell me you are praying for me, ask me how I am doing, etc... my response will be short because I do not want to cry or begin to dwell on it again. I appreciate hearing your concern for me and it touches my heart. I don't want you thinking I don't.... I just don't know what to say besides thank you for your prayers and when asked how I am doing typically I say "ok" or "alright". I am not lying because emotionally I have spent my tears. I have spent as much time as I am willing to, thinking about it (normally 1 day). Then, because I can not change any of it I step away from it and put it in the back of my mind. If I continue to dwell on it I will only make myself feel worse. There isn't anything I can do but change treatment. Once I begin a new treatment and have all the side effects then I will respond in regards to my symptoms. Please don't be offended or hurt. Know that I appreciate your concern and your prayers, but it is much easier for me to communicate in written form where I don't have to be emotional but can just state the facts.

Thank you everyone who is praying for me. Thank you for supporting me for such a long time, and praise the Lord that it has been such a long time. Although I would prefer to not have been on chemo for 4 1/2 years, I am thankful for the time with my loved ones. I mourn when thinking about leaving my loved ones, especially my baby girl. I can't fathom leaving her without a mother, and that is what hurts me the most. Thinking about her losing me, her confusion as to where I went and why I am not here to comfort her, her growing up without me there and her not having me to support her physically and emotionally through all those mile stones and complications life brings.

I will try to get back on and update as soon as I know what is going on. My MRI is tomorrow... hopefully I will have the results soon and shortly after have the approval from the insurance to begin. I would prefer to start asap and not give the cancer free range to grow at its will.

thank you all again

Burden and Blessings

In December I had to change to a different chemo, because the current chemo stopped working. The new chemo made me lose my hair, again. I had two courses of this treatment only to find out it wasn't working. Instead the cancer continued to grow and my tumor markers were at a number I have never seen. So, we changed to another drug... Which again didn't work. My tumor markers continued to steadily raise by a pretty good amount each week.

At this point there aren't very many chemo treatments left for me. However, there is a new drug that we have been waiting on the FDA to approve (TDM1). Two weeks ago when we found out the treatment wasn't working, this drug was still not approved. My doctor felt it would be a good time to stop chemo and wait fore the approval of this drug. It was scheduled to be approved the end of February. This gave me 3 weeks of treatment. Of course, this was not the best choice, but really the only choice.

In order to start the new treatment I needed to be off treatment for 2 weeks anyway, and we wanted to avoid any complications taking another chemo could cause. I am extremely afraid of the cancer growing while not receiving treatment. It was scary to think of it growing while on chemo and how much more it will grow with nothing on its way.

The new drug has been approved and we are now waiting for the pharmaceutical company to ship it to the hospital. I am hoping by the end of this week. I have been having other issues that lead me to believe the cancer is growing. I want to start on the new drug as soon as possible. I have a PET scan tomorrow morning, bright and early and should know the results by tomorrow night. I am pretty nervous about this scan... More so then any other scan over the last 4 years... By I am still praying for a miracle... I want a complete cure. I know God can do that!

We have also been so blessed. I have been concerned about how we are going to meet our deductible this year. It has been 2 years since. Have had any fundraiser and the money is almost gone. My mother in law and a couple friends have been working on a spaghetti dinner and silent auction fundraiser for March 9th, and then a couple days ago we received an unexpected visit from a lady, whom I have never met. She had heard about me from a friend and had seen a flyer for my fundraiser (which I believe is an old one, because we had not put one up where she saw it).

Her husband has cancer. He was diagnosed last year. At that time the community rallied around him and raised money for their medical bills. She was approached this year by an organization who needed a recipient for their fundraiser. She said they were doing well at this time and wanted to give them my name. So she found out where I lived and stopped by to ask if she could give them my name and number. I was so touched by her selflessness and kindness!

In less then an hour I received all call from the organization. It is a bunch of local church choirs who get together and put on a concert for a free will offering, and a Lutheran bank had offered to match whatever they raise up to $3000. They would then split it between two recipients.

I am very excited about the Lords provision... And a little nervous as I am supposed to speak in front of everyone that attends, but I feel The Lord has dropped this opportunity in my lap.