Sunday, November 30, 2008

Prayers and Thanksgivings

I got back yesterday from a great visit with my sister. It was so good to see her and my nephews. I laughed a lot with her and my brother in law and loved all the time I spent with my nephews. My older nephew is 18 and the young one is two. I got to play games with the older one and read books to the younger one. I have memories that I will always cherish. I took pictures of me and Tim and also got a video of me reading to my nephew. It was hard coming home and I cried on the plane when I realized that I might not see them again. There I was sitting on an airplane looking like a freak with a mask on and balling my eyes out. I am really glad that I went, not to mention it was the most laid back holiday I have ever had.

Today my church had a prayer service for me. Twenty to thirty friends took time out of their schedules just to pray for me. After a few short prayers and a psalm one of the priests put a chair in the aisle and has me come sit in it facing everyone. She then asked people to share their thoughts, prayers and thanksgivings for and about me. It was kind of hard being put on the spot and having everyone looking at me. Then people started talking and it got really hard. So many people said how I have touched their lives, the lives of their children and other youth. They talked about my dedication to youth and the people affected by cancer. They told funny stories about me and spoke from the heart. Of course I cried. Words of gratitude that I am in their lives, the courage and faith that I have and the lessons I have taught them were shared and they said how lucky they are to have known me. The whole time I thought about how lucky I am to have them in my life. Very few people get an opportunity to hear what people think about them and the good things that come along with it. When I was first approached about the service I thought it was more for others than for me. It would give people a tangible thing to do, but I realized that it was such a gift to me. I got so much out of it listening to everyone. When everyone got up to gather around me and lay their hands on me and pray I felt goose bumps. For months I have been unable to feel God. I have felt abandoned by God and very angry. Today I felt God through all of my friends. It was very special and I am truly honored.

I also finished all my Christmas shopping today. I am completely done. Every year I have the goal of finishing by Thanksgiving. Not only to miss the crowds, but so I can spend Advent preparing for the true reason of Christmas. All I need to do now is wrap presents, decorate the house, do some baking and get ready for the open house and most importantly prepare my heart and mind for Christmas.

I have been having a lot of trouble sleeping lately so I hope that tonight I will get a good night’s sleep. Tomorrow morning is the start of my new chemo regimen. I hope it will not be as bad as before and I can tolerate the side effects.

Tuesday, November 25, 2008

Flying off to see my sister

Turkey Day
Today I am leaving to spend Thanksgiving with my sister in Missouri. I can’t wait to spend time with them. My nephews are 18 and 2 and live too far away for me to see them very often. I am taking a video camera to record me reading a story to my nephew so he has something to remember me by. My brother in law is a goof ball so he is always entertaining, plus I won’t have to fight hard to get all the stuffing and white meat I want.

I decided yesterday to start the chemo next week. I could have had it yesterday or this morning, but determined I did not want to spend my holiday feeling like crap.

Prayer Service
My church is having a prayer service on Sunday 11/30 at 12:45 at St. John’s Episocpal Church in Ellicott City. If anyone who is local wants to come, the more the merrier.

Holiday Open House
I am having a holiday open house on 12/14 and I am looking for a few people to help decorate the house for the holidays the weekend of 12/6 & 12/7. Let me know if you are interested.

Monday, November 24, 2008

Crazy Week

Well it has been a crazy week full of tests and doctor appointments. I apologize ahead of time for the long post, but it has been quite the long week. Monday I started off my morning with a 7am CT scan down at Hopkins to check to see if the chemo has had any effect on the tumors – primarily the lung. Then I went to the primary care doc and found out I had a staph infection. Monday afternoon I went to acupuncture and then to the support group.

Tuesday morning at 7:30 I saw the oncologist to get my test results back. The tumors in the lungs have not changed in size. Which is good news and bad news – It could mean the chemo is holding the cancer at bay for now (at least in the lung) He confirmed the malignant lymph nodes. Then I went to another doc to have a Thoracentesis (fluid in my lungs drained). The fluid appeared to be consistent with cancer cells and they sent it to be biopsied.

Miraculously on Wednesday I did not have any appointments. We had a “Screw Cancer” Happy Hour for work. We are now doing it once a month in both Columbia and Baltimore City. We only had a few people, but it was a good turn out and at least I got to talk to each of them.

Thursday was a bad day. I think the news was starting to hit me and just was too much to handle. I hate telling everyone the news and watching their face fall as they realize the enormity of the situation. Plus, I was just (still probably am) at my rope’s end of handling this never ending emotional roller coaster. A good friend at work realized how bad I was doing and talked to me for a while and convinced me that I needed to talk to a professional. He drove me to my church and sat with my while I talked to one of my priests. It was good to just vent and cry and let all the feelings hang out without having to try and make sure I was saying the politically correct thing or beating around the bush. With their help I realized that my moods were just all over the place and probably needed to have my medication adjusted. I called the psychiatrist and that afternoon I went to see him and he tweaked my meds. It only took a little arm twisting for me to call the doctor.

Friday morning started by a visit to the Gastroenterologist to get the results of the endoscopy and other tests I had had done. I found out that while they found no tumors or obvious lumps in my stomach the biopsies were malignant for cancer cells in the stomach lining. Joy, Joy, just another place the cancer has invaded. Anyone keeping count of the number of organs in my body now housing cancer? They also confirmed that I have moderate gastroparesis (slow moving of the digestive track) and gastritis (irritation in the stomach) Both of which are adding to the nausea which is always present. They believe the previous chemo and radiation has caused the damage to the stomach. The doctor ordered a bunch more tests, but I have decided I am done with tests. NO MORE NEEDLES or tests that could come back as bad news.

Friday afternoon I went to see a new specialist at Hopkins. Actually he was the pulmonologist /oncologist that drained the fluid in my lungs. We had a great discussion about my options and for the first time in a long time I felt like my doctor was finally getting it and hearing me. He told me the cold honest truth and he did not sugar coat it and he told me what the treatment options were and what he would recommend, but he also told me he understood if I chose to do nothing. He confirmed that I could have as little as 2-4 months if I choose to do no treatment (less if I get another pleural effusion or sick), but he suggested a new protocol that could buy me as long as a year. We talked about tests and side effects and surgery, what to expect with the progression of the disease and much more. I will spare you all the details since this already a very long post. But in the end I left the office with a big decision to make – to treat or not to treat. It is very important to me that I spend the rest of my time here on earth on my terms and have the best quality of life. Last month I stopped the infusion chemo because I could just not handle the side effects anymore. So now I have to decide what I can handle and what is just too much.

On Tuesday I decided that I wanted to visit my sister in Missouri before I get any sicker and I arranged that afternoon to go to visit them for thanksgiving. One of my biggest regrets is that I will not be able to watch my nephews grow up and I want to spend as much time with them as I am able.

After the doctor’s appointment I went back to the office and talked to my co-worker who has become quite a sounding board and with whom without I don’t know if I would be fairing as well as I am. We talked for over an hour about my options and my feelings and just the facts of life as they are these days.

Friday night I did not get much sleep. My brain was going a thousand miles a minute and all the options were spinning in my head. Saturday morning I got up and journaled for a while and wrote down the pros and cons of each of the options and I made a decision. I am going to go back on chemo. It is the middle option of the high dose, low dose or no chemo choices. Supposedly the side effects will be less than before. Some nausea, like that is a new thing (did I mentioned I had to run out of church today to vomit?), lethargy, mouth sores, and neuropathy. But in the end I decided I have to try, I can always change my mind and stop at anytime, but I need more time. Not that I feel it would be giving up if I stop treatments, but I feel like I have not played all my cards yet. I have decided against radiation, surgery and the bone marrow biopsy. I am going on meds to help my lungs, kidneys and liver and will continue with the acupuncture.

I feel better after making this decision – very much at peace with it. I know that this is entirely up to me and everyone including my new doctor that will support me in whatever decision I make, but for now I am going to try the chemo. I will call in the morning to find out when I will start – I am sure he will want me to start right away and I am not sure I want to have it done before I go away on Tuesday. Yet another decision to make. I faintly remember when the only decision I had to make each day was what hat matched my outfit, which color socks to wear, or what flavor tea to drink – oh to go back to those days. I hope to have an easier time this week and would like to say no more doctors or visits to the hospital, but I know that will likely happen so maybe I only wish for one visit.

Thanks for taking the time to read this very long post and thanks to all the prayers and love from all. It truly makes a difference.

Oh – I almost forgot – I found out late Friday that the infection is indeed MRSA and they switched my antibiotics and I will be looking like a freak on the airplane wearing a mask.

Monday, November 17, 2008

Just another day on the roller coaster

I has been several week since I last updated the blog and quite a bit has been going on. First I decided on Halloween that I was not longer going to get the infusion chemo. I just can’t take the treatment anymore. I get so sick and my quality of life is so poor. I was talking to a friend that morning and I told him I felt like I was peer pressured into taking the infusion chemo and really did not want to do it. He asked me a couple of time why I was going to chemo that afternoon if I was not on board with it. As I was getting my stuff together to go to chemo that afternoon I realized that it is not how I want to live my life. Not having the infusion chemo may shorten my life, but the quality will be better. I am still on the oral regimen and I got a CT scan this morning to see if it is having any effect on the lung tumors.

On October 26th, I found a lump in my right armpit. I was hoping that it was just an irritated hair follicle from shaving and waiting a couple of days for it to go away. Well of course given my luck it did not. I had an ultrasound and mammogram last week that led to a biopsy of two lumps in my armpit and three in my breasts. The good news is the breasts are ok, the bad news is the lymph nodes in the armpit are malignant. Not a good sign. It is rare for ovarian cancer to spread to distant lymph nodes and is a sign of advanced cancer. I have always prided myself on being unique and not following the norm, but this is ridiculous.

As if that is not enough going on I got a cold last week. I was in Austin at the LiveStrong Young Adult Alliance meeting and felt awful. Things did not get any better when I got home. I woke up Saturday morning around 3am having trouble breathing. I thought it was just my asthma and took a couple hits of my inhaler. After I did not get any better I went to the hospital around 11:30. They gave me a breathing treatment and took a chest x-ray. It turns out I have a pleural effusion (fluid in the lungs) and they suspect it is cancer cells. The next step is to drain the fluid and do a biopsy. The survival rate for malignant pleural effusions is average of 5 months after diagnosis. Just to make things a little more difficult one of my biopsy sites from last week is infected. They put me on antibiotics on Saturday at the ER and sent a sample out to be cultured.

I missed my twin nephews 4th birthday party since I spent that afternoon at the ER. I know they did not miss me and I did get to see them, but I really wanted to go.

I went to the doctor today to get it checked and the culture shows that it is staph. The doctor thinks that it is MRSA and they did a nose swab and sent it out to be cultured. They also did a blood tests that may come back sooner, but is not always reliable. She put me on more antibiotics (for a total of three) and we are waiting on the culture results. If it is MRSA, they may put me in the hospital which is not what I want. I try to avoid the hospital as much as possible. It feels like the hits keep on coming. I am waiting to hear when they are going to do the Thoracentesis which needs to be done soon, but the worry is that since I do have Staph and probably MRSA the area is most likely to get infected. My blood count is low and they feel I am very susceptible to infection - like I didn't already know that.

I am feeling very overwhelmed and numb at the moment. I am also very angry that all this is happening and I am not sure how much more I can take. Why does cancer affect so many people? Why Me? What did I do to deserve this?