A new use for this blog

As a new year begins and as I start new treatment for my carcinoid cancer I am going to switch from journaling in notebooks to blogging. I will have to see which is more helpful.

My nephew Nic is dealing with a rare leukemia and is writing a blog about the steps he is dealing with to get to a bone marrow transplant from his brother Mitch. When I stop to think about all that this young man has dealt with since June of 2009 it makes me want to be a lot braver about my unknowns when he is being so brave with all the serious steps he is having to make at only 24 years of age. It makes me feel very humble and foolish for being anxious about what I am going through.

But I am feeling anxious nevertheless and I know it is the wrong thing to do but I catch myself feeling nervous about the unknown and fearing the side effects of the trial drugs. Really I should be so excited to start the drug because as of right now there is no treatment for carcinoid. Luckily it is slow growing, so even though there hasn't been much the medical world could do other than ablation of the sites it seemed a disease that you could learn to manage and live with.

Plus I am having other issues going on in my life right now, between menopause and a new empty nest I have a few emotional things that are major life issues to deal with. I began menopause fully about two years ago. It's onset was during my first round of trial drugs about four and a half years ago. I don't know if the stress or the side effects of the drugs put me into menopause but it began during this period. No pun intended. The hot flashes that I am still having are still annoying and I am also experiencing memories lapses that I guess are related to menopause. I walk into rooms and forget what I am there for. I don't remember things unless I write them down and then I will forget my list. It is really unnerving to feel like you are losing your mind.

I hope I don't have to have the octreotide shots that are required on this new study. My new doctor, Laconte, hopes that if I have negative reaction like I did in the beginning. But who knows, studies have shown that people that get the shot live longer than those who don't; so maybe I need it. I need to remember who is ultimately in control and that HE loves me.

So my new treatment will start on January 13th. I will go to Madison for a baseline CT scan and a MUGA scan which measure how well my heart pumps blood. I will also have a test dose of Octreotide. The next day I will have the full dose of the shot and an exam from Dr. LaConte. Then every 28 days I will get a shot and exam, then every other month a CT scan to check the progress. There are 40 other people on this trial and they have had some people just stay stable but they have also had from 25 - 46% decrease in size so that would be amazing. It has been happening very quickly in the study for the others so nothing to think it won't happen that way for me.

I will write more later.