#hawmc day one…

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#hawmc day one… Wordless Wednesday 🙂

Took a bit of a hiatus…

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So..I’ve been talking about this “10 years after ET” blog for a while…and by now you probably don’t think it’s happening. I promise it IS happening, and it WILL be posted…probably in May though.

During the month of April, I will be participating in WEGO Health’s #hawmc. The Health Activist Writer’s Month Challenge! Every day during the month of April, I will be posting a blog to go along with the themes suggested by WEGO Health 🙂

The Challenge starts tomorrow! Wish me luck!

Remember, you are your own best advocate. If you do not stand up for yourself, who will?

Until next time,

Lina

Quick Little Update

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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,

Lina

World Cancer Day

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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?

Lina

Linampn.com

@linampn

Resolutions…

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Today is the 2nd day of 2015, and I cannot begin to tell you the number of times I saw “New Year, New ME!!” or similar statements on social media the last few days. That’s not to say that I have anything against making New Year’s Resolutions, but I have to say that it makes more sense to me to make them uplifting, life improving resolutions. I would think that you would want to set realistic goals goals for yourself, rather than setting an extremely high bar for yourself, then beating yourself up if you do not reach it. I see a lot of people posting their resolutions, and a lot of times they seem bleak, or self-deprecating. Don’t “resolve to get your fat ass in shape”, resolve to become a healthier person, resolve to make healthier choices. Don’t tell yourself the things that you cannot do, but reaffirm every day the wonderful things you CAN do for yourself.

With that in mind, below are my New Year’s Resolution suggestions

1) Resolve to be a more positive person. Each day, attempt to see the bright side of whatever situation you may be in. It is there. It may not always be easy to see, but if you step back, take a deep breath, and look around, you will always be able to find a happy moment.

2) Resolve to be a kinder person to those around you. Maybe each day, go out of your way to reach out to someone you wouldn’t normally talk to. At work, at school, in line at the coffee shop; wish them a good morning, or ask them how their day is. I don’t know about you, but when people do this for me, it always leaves a smile on my face.

3) Resolve to be a healthier you. This could be physically healthier, mentally healthier, spiritually healthier, whatever you feel that you need in your life right now. Take a small step each day in the direction of bettering yourself. Take the stairs instead of the elevator. Take a time out from your hectic day to just relax, and breathe. Pray, meditate, read spiritual writings. Do whatever you need to do to make yourself feel healthier.

4) Resolve to more fully love the life that you’re living. Each morning when you wake up, be thankful for that morning. Each day is a gift and shouldn’t be wasted. Be fully present in your days, celebrate the small victories, sing along with the radio, call and talk to a friend you haven’t heard from in a long time.

And lastly a few resolutions solely dedicated to managing your health care (Come on, you knew it had to be coming…)

5) Resolve to be fully present in your health care. Pay attention during appointments. Take notes. This way you’ll always have that information to look back on after your appointment.

6) Resolve to be a proactive patient. Have a question for the doctor? Write it down. Bring it with you, and make sure your doctor fully answers your questions. If they do not, repeat the question and ask for another explanation.

7) Resolve to be an informed patient. Do research on issues that are concerning you. Now, this doesn’t mean consult random websites on the internet, but there are an awful lot of resources out there for you.

8) Resolve to advocate fully for yourself (be your OWN advocate!!).

9) Resolve to take the best care of yourself you possibly can.

10) Resolve to reach out to a caretaker when you need to.

11) Resolve to NOT feel weak when you DO have to reach out for help.

12) Resolve to acknowledge the strength of character it takes to admit you need help.

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

Until next time,

Lina

I haven’t forgotten!!

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I know Saturday came and went with no stem cell blog and I apologize. The more I read, and learn, the more organized I feel this series will need to be. There is an awful lot of information out there, and it is all extremely fascinating…and detailed…so I’m trying my best to compile info, and get it cited, and condensed. So…I won’t include a day to expect that here, but it is definitely in progress right now…

In other news, it’s cold season…and surprise surprise, I’ve got the cold everyone is sharing! Hopefully it will be gone soon, because this is no fun 😦

One last thing (and I’ll try not to be too obnoxious with this but…) if you could, please, please, please go to the Wego Health site and endorse my nomination 🙂 https://awards.wegohealth.com/nominees/959 I would really really appreciate it! Also, now is the time to nominate health heroes! Know an advocate that you feel needs to be recognized? Visit https://awards.wegohealth.com/nominees to nominate your hero 🙂

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

Until next time,

Lina

Here WEGO again…

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To my surprise, I received an e-mail telling me that I’ve been nominated again for a WEGO Health Activist Award!

It is so humbling to be nominated for the second year in a row! Thank you, nominator, whoever you are! I will now commence with a shameless plug/request for endorsements…

If you would like to share this, and endorse my nomination here, I would greatly appreciate it!

Thank you so much 🙂

Also, I am still working on my stem cell article…it just hasn’t gotten as far as I would have liked. There’s a LOT of information to get through…I’m actually thinking that it will be a series, like the “What is…” series I did a while back. Since there is so much information I think that might be a nice way  to present it. 🙂 So be looking for the first of the series to come out on Saturday 12/06/14!

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

Until Saturday,

Lina

A quick update…

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I had an appointment with my hem/onc on 11/12/14. As you may remember, I have been off all treatment since March of 2014. As of last Wednesday, my platelets are 599,000! For me, this is amazing. All of my other counts, while on the low side of normal, are back within range. So that’s pretty exciting 🙂

Otherwise not a whole lot going on here. I am still planning to write the post on Stem Cell research…I just keep getting sidetracked…Sorry! But with a nice long 4 day weekend coming up, I have a feeling that I’ll probably get working on it 🙂

I hope everyone has a Happy Thanksgiving!

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

Until next time,

Lina

Things Cancer Has Taught Me…

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When thinking about cancer, it’s a lot easier to dwell on the negative side of things. But if you allow it to, it can teach you a lot about yourself, and about life.

Cancer has taught me…to value life experiences. Good, or bad,the experiences in your life make you who you are. Now, I’ll be the first to admit that when I was first diagnosed, I was rather blasé about the whole affair, but after it hit me that this was a serious situation, I feel that I took control of it fairly well. I started keeping journals, and a binder in which to keep important information regarding my treatment. This experience, though not COMPLETELY positive, has made me who I am today. I strongly believe that my life would not be as good as it is, if I had not been diagnosed, and had the experiences that I’ve had over the last 9 + years. I’m fairly certain I wouldn’t be as appreciative of the things and the people in my life as I am now.

Cancer has taught me…to take chances. I’ve always been kind of shy. Not really willing to put myself out there, or be the center of attention. But since diagnosis, I’ve become a little bolder. A little more assertive. Definitely a little more empowered. Nothing reaffirmed this about me than this past summer when I went to San Antonio and Washington D.C. for MPN Events. I’m NOT someone who would ordinarily be comfortable with public speaking, but I am more willing to take risks, especially when it could benefit the MPN community, of course. But these are things that I would NEVER have done before diagnosis.

Cancer has taught me…perspective. Your views on life change drastically when facing a serious illness of any kind. it forces you to realize that life is shorter than you think. Knowing that at any moment my body could say “I think your bone marrow has worked hard enough, I think I’ll let it scar over and be useless, you know…forever” or “Hey, let’s throw a nice little blood clot into your brain or your lungs just for giggles” changes things. Things that used to bother me a lot, have less of an impact. Now I’m not saying that I’m mellow, and calm about everything. Don’t get me wrong, I still get frustrated, even angry at times. But I’m talking about the little daily annoyances. The lights were not in your favor on the way to work, or maybe you didn’t make it to the bank before they closed, whatever the case may be, is just NOT as important anymore. And then there’s the positive things…they’re even MORE positive than they were before! You did NOT get stuck behind the school bus on the way to the office, or perhaps your boss told you he/she appreciates the hard work you put into the project you were working on, these are all infinitely more exciting than they may have been before. I find myself being excited about some of the things that otherwise I may have taken for granted. The little things are more exciting, and the important things like friends and family are all the more important.

So these are the three biggest things my cancer has taught me. What are some of the things cancer has taught you?

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

Until next time,

Lina

Question for frequent flyers…

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For those of you with an enlarged spleen,  who fly often – Do you find that your belly hurts more when you’re in the air? Prior to this summer,  I hadn’t flown much,  and my last flight was my honeymoon 2.5 years ago (at which point my spleen was definitely enlarged,  but not as enlarged as it is now). This summer I have taken several trips and I have noticed that during each flight my pain increases significantly. I’m writing this from the plane right now, and I’m feeling terrible. It gets so bad that I get dizzy and nauseated, and get very flushed. Now before someone suggests this: No.  It’s not motion sickness. I’m not prone to it at all.

I’m curious if anyone else experiences this. Maybe im just weird…well, we know I’m weird… but i mean about this specifically. My guess is it’s got something to do with cabin pressurization.

I’ll post this as soon as we land 🙂 Thanks in advance for any input/suggestions.

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

Until next time,
Lina