Quick Little Update

So I haven’t been on PegIntron since March of 2014 (coming up on a full year next month). Since discontinuing the PegIntron, my platelets have stayed fairly low, usually 500-600K range, and other than the usual fatigue, spleen pain, and headaches, I really haven’t had a whole lot of issues recently. Over the last few weeks though I’ve started having a lot more “weird” moments, as I refer to them. I’ve had a rather constant state of feeling not right, and being almost a little confused from time to time. I’ve also noticed a lot more bruising, and fatigue than normal. On top of that I had 3 migraines in one week, and the “glitter vision” has started up again. I can’t remember if I’ve described that here or not in the past…but basically it looks like someone took a handful of very fine glitter and tossed it in front of my eyes, but only around my peripheral vision.

Since I was feeling so weird I decided it was probably time for a CBC. The results show that my platelets have gone up fairly significantly. Not to where they used to be (for years my platelets were constantly in the millions), but certainly higher than they’ve been around 800K. I called the NP at the Hem/Onc’s office and asked for their advice. I was told to increase from an 81mg aspirin daily back up to a 325mg aspirin daily. Other than that, I’m remaining off all other treatments and watching it to see if there are any changes.

I’ve also recently gotten back on my SSRI for a number of reasons. First being that I haven’t felt like myself lately. I don’t think I’ve really talked much about that here – but I do experience bouts of depression from time to time, and so the low dose SSRI is a dual helper for me. In addition to helping me stay more level in my moods, it has the added bonus of helping to repel the serotonin carried by my platelets that can help to trigger migraines.

Now before anyone makes the comment “What do you mean gotten back on it…?” Yes. I do take myself off of it from time to time. I know full well you shouldn’t do that. But after a while of being on it I start to feel….vanilla. Like I have no emotions. No highs, no lows. I just kind of exist. And when I start to feel like that, I wean myself off of it, and just wait until I feel…well…not myself again…and start it up. I know this is not a good idea. I know I shouldn’t do it. But…somehow it’s the pattern I fall into on a somewhat regular basis.

So that’s my very short little update. I’m still feeling pretty crappy right now. Headache, tired, just kind of…not quite right…we’ll see what happens. I don’t see the doc again until 4/29, so maybe things will change between now and then.

I’ll be updating again fairly soon…hard to believe, but this spring it’s going to be 10 years since I was diagnosed. I’m planning to write a “What 10 years of ET has looked like for me” blog for that. Stay tuned 🙂

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

Until next time,


World Cancer Day

Being #worldcancerday, I thought I would post a little something today. Cancer is not a nice word. It evokes fear, and sadness, and bad memories.

Let’s talk about some basics first: Cancer can be generally defined as the uncontrolled division of abnormal cells in some part of the body. There is approximately 30-40% risk of developing cancer in ones lifetime. No two instances of cancer are the same. Cancers grow at different rates, and respond to different treatments.

But generally speaking, Cancer just sucks.

The discussion of cancer also brings up, what for me is a somewhat controversial word; Warrior. I have argued against the use of this word a couple of times in the past, so below will be a repost from March of 2014

The use of the words “Warrior” or “fighter” in reference to Cancer patients baffles me. There are two implications with these words that bother me most.

First is the implication that this is a “battle” with an opponent who fights fairly. This is not true. Cancer does NOT follow any particular regulations. It does not conform to accepted rules of engagement. Cancer is mean. Cancer plays dirty. Cancer is not a fair “fight”. Frankly, Cancer is a jerk. Cancer is the bully on the playground, who is twice your size, steals your lunch money, and pushes you in the dirt. Cancer is an invisible thief who breaks into your life and steals your energy, your health, your peace of mind. But to me, Cancer is not a “battle”.

Second is the implication that those who “lose the battle” against their cancer did not fight hard enough. This is also not true. The best I can hope for is to try to be an active participant in my treatment and situation. My personal motto, as I’m sure some of you are aware, is to “Be assertive”. This, in my opinion, is the way to approach your cancer.

I am sure that there are those who disagree with this. That for some, approaching Cancer as a battle to be won is comforting and reassuring. That is absolutely fine. If that approach helps you to become an active participant in your treatment, then that is what matters. What I think we can agree on though; is that Cancer is cruel. It can hurt every aspect of your life. But it is a situation in your life from which you can learn. From which you can grow. From which you can draw strength. Some of my biggest life lessons have come from Cancer. I learned a lot about myself through my experiences, and it has truly made me who I am today. But I am not a warrior. My situation is not a battle. It is my life. I am myself; a patient, a wife, a sister, a daughter, a friend.  And I am me.

Thank you,

As always, you are your own best advocate. Be assertive, be persistent. If you do not take care of yourself, who will?