Going back on FOLFOX

I went to the SCCA today for my scheduled treatment. A typical day for me is to first have my port accessed, and get my blood drawn. Then I see my doctor and he goes over the results of the blood work as well as checking my vitals and asks me questions about how I am doing and answers any questions I may have. Then I go upstairs for an infusion that lasts 30 minutes. It has become very routine to me. But today was different. My numbers have gone up, quite a bit. They are now 624. And that is after increasing my current medication. He said he didn't feel that it was effective any more and wanted to put me back on FOLFOX which was the chemotherapy that I was first started on. It wasn't really a surprise to me. I knew this was coming and I could tell the medication wasn't as effective as it once was but I was still a little disappointed.

But I've been here before and I know what to expect. I asked him how long I need to do the folfox and he said he normally starts with 2 months and then does a CT scan to see how things are going and  makes a decsion based on the resuls of the CT scan.

So, for now I say good-bye to ice, good-bye to nice cold drinks, good-bye to ice cream and good-bye to nice thick hair. And I say hello to my old friend the pump. We will need to get reaquainted with each other. It goes everywhere with me for 3 days and 2 nights every other week. It gently reminds me it is there with it's regular pump noises. It sleeps between me and Eddie so it doesn't fall off the bed. And I need to be careful to not keep turning in the same direction all night so we don't get all tangled up together. I need to remember to pick it up before I start walking anywhere...to answer the phone, to wash my hands to get the remote. If I forget to take it with me, I am reminded very quickly!

I can do this. I will keep focused on 2 months...just 2 months.

Keep those prayers coming, they are working. I am so grateful that I feel as good as I do.

Genetic Testing

Back in early November I had some genetic testing done. They wanted to see if I had Lynch syndrome which is an inherited condition that increases the risk for developing colon cancer and other types of cancers. Doctors estimate that about 3 out of every 100 colon cancers are caused by Lynch syndrome.
People who have Lynch syndrome have a significantly increased risk of developing colorectal cancer and an increased risk of developing other types of cancers such as, endometrial (uterine), stomach, breast, ovarian, small bowel (intestinal), pancreatic, urinary tract, liver, kidney, and bile duct cancers.
In addition, cancer is more likely to be diagnosed at a young age. The average age for colorectal cancer to be diagnosed in someone with Lynch syndrome is 45, as compared with the average age of 72 for a new diagnosis of colorectal cancer in the general population.

I recieved a phone call today with the results of the testing. They said everything looked normal. I do not have Lynch Syndrome or any mutated genes that would lead to cancer.

So there is no answer as to why I developed colon cancer at such a young age but I find it comforting to know that I don't have Lynch Syndrome and can't pass that on to my children...although they will need to start having colonoscopies at the age of 30.

PET and CT scan results

Friday I went in for  PET scan. I haven't had one before. I wasn't sure what to expect.

I know some of you won't believe me when I say I have been sitting on my duff for too many days now. And just when the thought crossed my mind that I should take advantage of the treadmill in my house, I remembered that the PET scan required me to NOT exercise for 48 hours before the test. No problem! I sat back and continued duff sitting.

The test was interesting. I got a nurse in training. She was very nice and very attentive, but...
She was putting an IV in and couldn't find a vein. Once she had the needle shoved all the way in she moved it around looking for the vein. Ouch. She couldn't get it so she tried the other arm. Same thing. Ouch. Then she got the nurse who was training her to do it. Then I got a catheter...um...we'll just leave it at that.

Then the "nuclear technician" came in and injected something radio active into me and everyone left the room. I was to sit there for 30 minutes and sit still and not read or move. Every once in a while I would catch myself reading the IV bag or the contrast bottles and then I realized I was working my eyes, and that I should just close them. It's amazing how many things there are to read,when you're not supposed to read!  Then I had to drink 1 1/2 bottles of contrast for the CT scan. Then I walked to another room where the PET and CT scans would take place. I laid down and put my hands up over my head. They placed a towel on both sides of my face to keep my head still and a pillowcase over my arms so that my arms could totally relax and the pillowcase would hold them in place. Then I went inside the machine and had to lay still for 40 minutes. 20 minutes was a pieces of cake but then they clamped off my catheter and filled my bladder beyond reason and I still had to stay still. THAT was hard! Finally the end came. Whew.
Yesterday we went in and got all the results. The reason my doctor ordered the PET scan was because of my tailbone pain. He was concerned that there might be cancer in the bone. That came out negative. Good news.
My numbers only went up by 1- -now at 306. And the scans showed tumors growing by just a millimeter. The doctor told me before that at some point I would need to go back on the chemo pump and it looks as though things are trending that way. We're going to try to up my dose of the maintenance chemo I'm on now to see if I can handle it and to see if it makes a difference. So we're just watching and waiting. Still feel great. :) Thanks for all your prayers!

Christmas

I have been looking forward to Christmas for some time. I had an assignment at girl's camp this year to speak for an hour on enduring to the end. The theme for camp was The Olympic Spirit-Light the Fire Within. So, I structured my talk around the Olympics and told them my life story, using hurdles as an analogy of going through hard times. It felt good to look back at my life and how it unfolded and to be able to see the many ways in which I was blessed and protected.

A  friend told me that I needed to write it down for the benefit of my children. So I secretly began making a book, writing down my story, using the same structure that I did for my talk at camp, and adding pictures. Knowing that I was also going to give this book to all of my siblings as well as my children I couldn't wait for Christmas when they would all be able to see it.

I had a wonderful Christmas and everyone was home...except Ian. We got to Skype with him and he looked good and it was fun to see him.
We went ice skating, made cookies, went Christmas caroling, went to see A Christmas Carol, the play,  Le Miserables, the botanical garden lights, played games, ate till we were stuffed, went shopping together. Corey brought his girlfriend home for Christmas and we enjoyed getting to know her. It was all very nice.  Everyone loved the book. It is now available to purchase on blurb.com for all my friends and family who may want a copy. You can see a preview of just a few pages by clicking on the blurb badge at the side of this blog.

One day before Christmas,  I wasn't feeling well at all. It was most definitely cancer related and I felt horrible. I have been feeling so good, for several months, it was easy to forget at times what is going on. Having that day was a reality check and made me even more thankful that I feel so good. I can handle being sick if I don't feel sick.

They're calling my numbers stable. They are now at 305. Next month is my  CT scan. I will also be getting my first PET scan. I have been having pain in my tailbone for months and it's not getting better so they decided to run a PET scan. We'll see how that goes.

Very soon we say good-bye to 2012, a year that will forever be etched in my brain. I am happy to begin a new year but remain grateful for the blessings of love and friendship that have poured over me and my family this past year.

Thanksgiving

My last blood draw showed my numbers at 296 which is again, a very gentle increase. I am grateful for that and for the fact that I still feel good.

I feel this would be an especially appropriate time to give thanks for all my blessings. Though I cannot begin to number them, I would like to express my gratitude for some of them.

I am grateful to have had the opportunity to spend this past Thanksgiving with most of my family. Most everyone was there and those that weren't were missed.

I am grateful for my siblings who have expressed their love for me through words and actions and who I know I can count on for anything. I am grateful for their spouses and all of my nieces and nephews who I wish I knew better.

I am grateful for the efforts of those who are mending fences. I am grateful for forgiveness and repentance and the opportunity we have to let go of the past and be free to feel joy and begin anew.

I am grateful for a caring husband and that I don't have to do this alone. I am grateful for wonderful children who I am proud of and who fill me with joy.

I am deeply grateful to be surrounded by friends who I know I can count on and who continually lift me and support me, challenge me, and comfort me.

I am grateful for far away friends and their love and support and the memories we share.

I am grateful for the challenges I've faced which have caused me to learn and to grow. They truly have been a gift.

I am grateful for my house and the fulfillment I receive in making it a home. I am grateful for my husband's job and for his support which has allowed me to stay at home to raise our children.

I am grateful for doctors and nurses and research which allows me to feel so good under these circumstances and which allow me the time to plan and to prepare.

I am grateful for my knowledge of where I have come from and why I am here and where I am going after this life.

Although I still feel fear at times, I am grateful to be able to feel peace in a world that is falling apart.
I am grateful to know that a loving Heavenly Father watches over us and wants to bless us.

I rejoice in my blessings and want nothing more than to please my Father in heaven who has blessed me so abundantly.