Super Cool Exciting News/Shameless Plug

So, I found out Wednesday that I have been nominated for an award from wegohealth.com. Then I found out today that I have been nominated for the Best in Show: Blog award, AND also now the Hilarious Health Activist Award!!! Holy Cow!

I am so unbelievably flattered to be nominated! It is so humbling to know that my blog has touched people enough to warrant this nomination. Thank you so much!

Now for the shameless plug part – It would mean an awful lot to me if you might consider endorsing me for either or both awards, whatever your heart desires 🙂 If you will just follow this link, look for me (linampn) and click endorse, I would greatly appreciate it!

Than you all so very much!

I’ll be posting again very shortly (not another plug, I promise!)

Until next time, be strong, be assertive,

Lina

Thankfulness…

I am sure many of us have seen the daily Facebook posts during the month of November about all of the things our friends are thankful for. Don’t get me wrong. I’m happy that people are recognizing how blessed they are; that is a wonderful thing. My argument is that you should be thankful every day of the year, not just one month out of the year.

Now, I realize that sometimes it’s hard to be thankful. It is much easier to think of the negatives: the bad day at work, the argument with your spouse, the bills that need to be paid, or any of the other things that may be happening. The thing is, though, all of those negatives are what make the positives that much better. Without them, we would have no idea how good our lives really are. 

Often, someone who has just learned about my health situation  will say something like “Oh, I’m so sorry!” Well, I’m not. I’m not sorry about it at all. My ET has changed my life. Not all for the good, I’ll admit, but it has helped to make me who I am. It has made me a much bolder person than I was before I was diagnosed. It has helped me to see the brighter side of things more often, which has made me more able to see the things for which I am thankful. 

I am thankful for my family, the people who have known me my entire life, and have supported me through all of my choices (good, bad or otherwise). They were there for my diagnosis, and treatment, and all of the other excitement that came along with it. Without them I don’t know what I would have done. 

I am thankful for my husband. I was diagnosed just after we met in college, and even after seeing what I mess I was, he still stuck with me. I love you, M. 

I am thankful for my friends. Even though I’m not much fun sometimes, and can’t go out as often as I’d like, they’re still there for me.

I am thankful for my dog and writing-buddy, Tesla. Whenever I’m having a bad day, not feeling well, he’s there. No matter how long I’ve been gone he is always happy to see me, and ready to greet me with a wagging tail and a slobbery kiss. 

This is just the short list, but I am thankful for so many things in my life, and I am thankful for these things every single day.

Even if you can’t see it right now, there are things to be thankful for. My suggestion is to find the things in your every day life for which you are thankful. The girl at the coffee shop remembered your order. The lights were all green on your drive to work. The cop let you off with a warning. Whatever it may be, there are things in your life that are wonderful.

I would like to add that I am thankful for each and every one of you who may be reading this right now. I hope in some small way I have helped you to look at your life with a different perspective, and see the great things in it!

As always, be assertive. You are your own best advocate.

Until next time,

Lina

 

Fears; Disease progression

When I was first diagnosed, I knew absolutely nothing about MPNs. And for a while…I was totally fine with that. But after a few months of not knowing what was going on with me, or my treatment, I decided to do some research. Some of what I learned was reassuring, and comforting. Some of it much less so. (I should add that the majority of my research was done on the internet because, honestly…where else does a freshman in college do research…) The internet is a wonderful place to find information; but I advise using large amounts of caution – the internet can also be a scary place.

One of the first things I saw when I started researching was that the disease could…change…and become something more serious. Like Myelofibrosis, or Acute Myeloid Leukemia (AML). This terrified me. I didn’t really have hard evidence to tell me that I would progress to MF, or AML…but it was in the back of my mind that it was a definite thing. While the likelihood of it actually happening is pretty low, it is difficult not to focus on. Toward the beginning of my diagnosis I was always paranoid or thinking the worst, and I had to force myself to stop jumping to those conclusions.

While at the Chicagoland support group, one of the questions I asked Dr. Stein was about disease progression. How likely is it really? He said that the risk of progression to MF from ET goes up to about 10% after 15 years, and for PV patients it was about 15% after 10 years. I felt a lot better after hearing him say that.

Even though 10% is pretty low, I was still curious about symptoms of disease progression, so I asked Dr. Ruben Mesa, of the Mayo Clinic in Scottsdale for some information. He very kindly agreed to help me. The following information is paraphrased from an e-mail I received from Dr. Mesa.

For patients with advanced MPNs, there tend to be many difficulties and symptoms which indicate progression. For example, a drop in blood counts; either bringing blood counts to relatively normal levels where before they required intervention thru phlebotomy or drugs, or bringing them so low they require transfusion. An enlargement of the spleen is often seen, which causes pain and discomfort. The bone marrow also becomes scarred.

There is still no definitive reason behind progression in MPNs. It is thought that JAK2 inhibitors might help to delay disease progression, and also that drugs like Interferon has been shown to help to delay it. Aside from that though, there is not a clear reason/form of prevention.

Another way patients progress is typically from MF to Acute Myeloid Leukemia. (it is less likely, but it is also theoretically possible to see progression from ET or PV to AML).

As a patient I still fear that progression from ET to MF one day, or even possibly AML…but I try really hard not to let it nag at me. When something strange happens (A new or different symptom, for example) I do wonder…but I don’t automatically assume the worst anymore the way I used to.

I know I’m repeating myself when I say this; but I strongly recommend being an informed patient, and a partner in your own health care. Things are much less frightening when you know what they mean, and it is much easier to take care of yourself when you know what is going on.

You are your own best advocate. If you do not take care of yourself, who will?

Until next time,

Lina