#WigginOutOverMPNs

Ladies and gentlemen, I’m sure we’re all aware that the month of September is Blood Cancer Awareness Month. In order to help raise awareness for our very rare family of diseases, I have started an event that will be ongoing the entire month. I am hoping to get participation – PLEASE PLEASE join me in #WigginOutOverMPNs every #WigginOutWednesday!

Please join me every Wednesday this month for #WigginOutOverMPNs Wear a funky wig, do a crazy hairstyle, even wear a silly hat! Whatever you choose to do, post a selfie on social media, using the hash tags #WigginOutWednesday and #WigginOutOverMPNs Help us raise awareness of this very rare family of blood cancers!

Add me on facebook and I’ll invite you to the event!! https://www.facebook.com/lina.mpn

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

Until next time,

Lina

The Sandbag Theory of Energy

We all know that fatigue is one of (if not the) most prominent symptom of MPNs. I have struggled for a while to come up with a way of explaining it, that feels relevant to me. Now don’t get me wrong, I still adore the Spoon Theory, but I have another view to add as well now. 🙂

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We all possess an invisible bag that we carry around every day. As we exert energy, sand is added to the bag, making it heavier, and heavier as the day goes on. The more strenuous the activity, the more sand is added. As the bags get heavier, we move more slowly. It makes each action we have to perform that much more difficult. On a good day the bags are only partly full by the end of the day. However, that also means that we didn’t get to accomplish much that day.

On the days that I am more active, I feel my imaginary sandbag getting heavier, and have difficulty moving as quickly as I’d like. These sandbags don’t just slow down physical activity. They can also bog down our minds. I often feel as though my IQ has dipped several points throughout the day . No matter what I do, I can’t shake the feeling of being weighed down, mentally and physically. The heavier it feels, the more exhausted I feel. Some days just getting showered, dressed, and driving to work can begin to fill the sandbag. By the end of the day it can be nearly impossible to muster the energy just to cook, and eat dinner. Some days the only thing I have the energy left for is to change clothes, and crash on the couch.

We all have good days, and bad days. It’s very easy to get frustrated when we can’t get as much done as we feel we should, but we need to accept that some days we will not be as strong, or as quick, or as sharp as we’d like to be. On these days we must cuddle up on the couch with a nice warm blanket, a cup of tea (or something stronger, if we’re so inclined) and relax. That sandbag is heavy, we’ve earned the downtime!

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

Until next time,

Lina

Coming out of the fog…

Happy Weekend, all! It’s a beautiful day, so I felt that i should take this opportunity to write a quick update.

After only 2 weeks of Hydrea the side effects I was experiencing were worse than the symptoms of the disease. Not only that but my platelets had dropped from 880,000 to 552,000. After a discussion with the NP at my hem/onc’s office we decided that it would be best to stop the Hydrea for now. I am already starting to feel a little bit better. The nausea is subsiding, and the brain fog is lifting. I still feel it, but I can tell that it’s leaving.

I’m still not quite feeling like myself lately though. One of the problems I’ve been having lately, is what feels like a very swollen lymph node on the left side of my neck below my jaw. It has been very painful. It actually kept me up a lot Friday night. Turning my head, swallowing, even breathing was painful. I’m not sure what is causing it, but if it isn’t gone by Tuesday I will probably go see my GP about it. Other than that, nothing is really new. The spleen pain is still problematic, I still have a lot of headaches, and fatigue, but I’ll take those issues over constant nausea, and brain fog any day.

I will go for another CBC on Wednesday and we’ll see if anything has changed since last week.

Not much else to add at the moment, so I’ll end this here.

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

Until next time,

Lina

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?

Lina

Linampn.com

@linampn

Things Cancer Has Taught Me…

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

FINALLY!

Just a quick little blog for right now…

I finally heard back from the NP at my Hem/Onc’s office. She agrees that it is probably time for another BMB. She hadn’t realized it has been 9 years since the last one. As for the way I’ve been feeling, she didn’t really have a whole lot to say on that. My next appointment is 8/20, so I’ll talk to the doc about it all, and pick his brain for a while. At the same appointment we’re going to schedule the BMB.

I also spoke with her about getting tested for the CAL-R mutation, so she is going to put in the order for me for my appointment in August. I’m pretty curious to see the results of that. 

Are any of you CAL-R positive?

What about Jak2?

Remember to be assertive!

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

Until next time,

Lina

NORD MPN Patient Meeting, San Antonio, TX

Whew. So, that was quite an experience. Flew out last Friday afternoon, got in to San Antonio Friday night..the event was Saturday, and then I started writing this in the airport ready to fly home. (Then my fatigue really hit me, and I had to give up on the writing for a while. I needed a nap lol)

There were presentations given by Dr. Michael McDevvit of Johns Hopkins, two representatives (Sharon and Adriana)from the Leukemia Lymphoma Society and also from me.

Dr. McDevvit’s presentation as very informative. He talked a lot about clinical diagnostic criteria, and how you “know you’re in trouble when there are this many steps to a diagnosis”. SO TRUE. Since our diseases (ET, PV, MF)mimic one another, and also many other diseases, I guess it makes sense that they would have to add several other steps to the diagnostic criteria to ensure that they are actually diagnosing us correctly. And there is still no guarantee that will happen. It seems that we are misdiagnosed more commonly than we are diagnosed correctly.

Adriana, and Sharon, from LLS presented on the different functions of LLS. How they raise money, how they support patients, different support groups that are available, etc. They also taught us some mind body techniques to help with the stress, and the fatigue that can sometimes come our diseases. If anyone is interested in that, I will post them here 🙂 Let me know in the comments.

The following is my presentation (in full…not the truncated version I ended up delivering)


 

Hello there! I’m so glad to see so many of you here today! I’d like to start out by saying that if I appear

nervous, please forgive me. It’s only because I’m mildly terrified. (smile)

As they said, my name is Emily, but I usually go by the nick-name of LinaMPN on social media, and my

blog, so I’m more of a behind-the-scenes kind of girl, but I will do my best here today.

I am 27 years old, and I have Essential Thrombocytosis. I was officially diagnosed when I was 18

years old, after an initial misdiagnosis by my GP. I presented with fairly vague symptoms of fatigue,

headaches, and bruising. The fatigue, I was able to write off because I was 18, a freshman in college,

taking 18 credit hours that semester, working, and trying to maintain some semblance of a social life.

So it was pretty easy to pass off the fatigue as “overwork”. The headaches were also relatively easy

to ignore as a symptom, because I’ve had migraines since I was 10 years old. Headaches were not

unusual for me. But the bruising was harder to ignore. It seemed that just about every day a new,

large bruise was popping up somewhere. Normally if you have a bruise the size of a softball on your

belly, or your arm, you know where it came from, or how you got it, but these bruises just seemed to

randomly appear. After visiting my GP with those symptoms, she felt it would be best to draw some

labs. Somehow my platelet count came out as 13,000, which led to an incorrect diagnosis of Idiopathic

Thrombocytopenic Purpura, or ITP. My GP decided to prescribe me steroids, and play that watch and

wait game for a while. After a brief stint on prednisone my GP decided we should draw another CBC.

As it turned out, my platelets were actually 2.6 million. When we discovered this, my GP immediately

stopped my prednisone regimen (YAY!), admitted that I was far too weird for her to treat, and referred

me to a Hematologist.

This hematologist decided that it would be best to do a bone marrow biopsy (everyone’s favorite event,

I’m sure…) and the results confirmed ET. After diagnosis, and much discussion my hematologist decided

that it would be best to begin taking Anagrelide. How many of you have taken Anagrelide? And how

many of you had issues tolerating Anagrelide? I’m one of those people who did NOT tolerate Anagrelide

well; headaches, heart palpitations, dizziness, shaking. It did not help that the hematologist I was

seeing had never treated an MPN of any variety before. What helped even less was that he was a fan of

changing the dosage of my Anagrelide every. Single. Week. The higher the dose, the worse the side effects, and

unfortunately no matter what the dosage, we never did see the corresponding drop in blood counts that

we were hoping for.

At this point my family and I determined it might be best to try a different doctor. My mother was

undergoing treatment for breast cancer at the same time this was happening, and so she asked her

oncologist if he had any recommendations, which led me to my current oncologist.

My new oncologist determined that Hydrea would probably be a better fit for me, so we began at a

relatively low dose. But we found that it took 2 grams per day before we finally saw an effect on my

platelets. Unfortunately it also caused a HUGE drop in all the rest of my blood counts as well, so we had

to discontinue it for quite a while.

Being a young/tech savvy patient, I spent a lot of time researching alternative treatments. I had heard

that a lot of other patients were having a lot of success with Interferon, and I very much wanted the

chance to try it.

My doctor is fairly conservative though, and had never treated a patient with it before. It took several

months of pushing, and pleading, and darn near begging, before the doctor would agree to it. Even after

he agreed though, we still had to deal with the insurance company. The use of PegIntron, which was

the chosen version of the medication, is not approved by the FDA for the treatment of MPNs. I had to

appeal to my insurance company three times to see if they would allow the off label use to be covered

under my policy, and unfortunately, that answer was no. Luckily though, I was able to get my meds

directly thru the drug company, through a patient support program they offer.

I was on PegIntron for 2 years, until this past March when I had some complications that we later

found were unrelated to the treatment. Oddly enough, my counts are continuing to go down, even off

treatment, so for now we are on “watch and wait” until my next CBC in July. If my counts continue their

downward trend, then it might be time for another bone marrow biopsy.

That’s more than enough about me, let’s talk about the group I’m here to represent. I am here on behalf

of the MPN Research Foundation. They were founded in the year 2000 by a group of patients who were

very disappointed by the lack of available information and the lack of research that seemed to be taking

place for MPNs. Hoping to change that for other patients, the MPN Research Foundation was born.

Since this group was founded by patients, you can be certain that their goals are the same as yours;

The main goal, is finding a cure. The MPN Research Foundation only funds projects relevant to PV, ET

and MF, and the terms of each grant are negotiated to make sure they maximize the money invested

in actual research. To date, The MPN Research Foundation has awarded approximately nine million

dollars for MPN research. In the year 2014 alone they have One Million Dollars in grants planned. While

their main goal is to further research, they also want to support patients in as many ways as they can,

particularly thru partnerships with groups like NORD.

They connect patients with doctors. They connect patients with research studies, with support groups

– most importantly, to me at least, they connect patients with each other! I don’t know about the rest

of you, but when I was diagnosed, I felt extremely isolated. There was no one that I could talk to that

really understood what I was going through. Now don’t get me wrong, I have an extremely supportive,

wonderful family, and great friends, but the blank stares when I would try to explain how I was feeling

were not terribly reassuring. It wasn’t until I stumbled upon the MPN Research Foundation and was

connected with their patient support groups that I felt that I was no longer alone. From the very first

meeting I attended in 2011, my entire perspective on my disease changed. Just knowing that there were

people out there who were working to change the way that people understand MPNs, and that are

working to help find a cure made me feel so much better, and inspired me to become a more proactive,

empowered patient.

The best things that you can do for yourself are to get educated, and to be proactive! Learn as much as

you can about the latest research and treatment options. Take your knowledge and share it with family

and friends! Become an MPN activist, and join the MPN Research Foundation in pushing MPN Science

closer to better treatments, and hopefully a cure for our diseases!

To find out more, I strongly recommend that you take some time out to look at the website. There you

can sign up for their newsletter, and see the latest news, research, and information on events you can

attend.

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

Thank you very much


 

Next up on the agenda is Washington D.C. for the OVAC Lobby Days! I’ll be there on 7/7-7/8. I’m excited and nervous. Mostly excited. I’ll update as I am able, and hopefully we will see a good positive outcome!

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

Until next time,

Lina

Living Well with MPNs Review/Recap plus a personal revelation

Hello there, dear readers. I hope you are all having a wonderful week 🙂 The weather here is unseasonably cool, so I’m taking full advantage of it, and writing outside with my wonderful writing buddy, Tesla! (This note is from when I started this blog last weekend lol)

I’d like to start this entry by talking about last weekend. M and I had a fantastic time in Chicago. I was so thrilled that he was able to come with me to the Living well with MPNs meeting!! Firstly I’d like to thank the MPN Research Foundation, and Patient Power for putting on this wonderful event! I was so very grateful to be able to join everyone there. One thing I was surprised by was that it was completely free! The day started at 9:45, they offered breakfast, there were several groups set up with tables, and information. I am going to say right now, that unfortunately my day began with a pretty terrible migraine. My husband and I walked from our hotel to Northwestern’s campus, and just as we arrived in the lobby and got situated, it began. The aura and the pain were terrible for about the first 2 hours of the day, so I was unable to interact with the groups out in the lobby 😦 Hopefully someone who may have been there will have gotten information from the groups that they would be willing to share with me!

As we were called in to the auditorium, everyone seemed a little bit nervous. Kind of like walking into a lecture hall for the first time in college…people mostly kept to themselves at first, and weren’t really interacting just yet. But then as the speaker, Jeff Folloder began to ask questions, and we all started to notice one another nodding along with the responses, and we (at least I) realized that these people were all just like me…we (I) began to warm up a bit 🙂 (I’m referring back to my notes just now, but I’m sure I’m going to miss a few things…I’ll link to the videos on Patient Power’s website as soon as they are posted though 🙂 )

One of the questions that seemed to be a hotly contested issue was the question of age as it relates to the treatment of patients. It would seem that the general consensus USED to be that, for some reason as soon as a patient turned 60, they became significantly higher risk. The implication from the experts (Dr. Brady Stein, and Dr. Alison Moliterno) is that age does not really correlate with ones risk as strongly as the medical community used to think. It is more an issue of whether you have a history of thrombotic events, or heart disease, or other issues that may not mix terribly well with an increased risk of clotting. You could be 79 and have the blood vessels of a teenager, or be in your 30s with the circulatory system of a 90 year old. It really varies by patient.

What made me happiest was how many times I heard the doctors talk about advocating for yourself, and being assertive. I was so, so happy to hear it. It is so very true, and I feel so strongly about it.

The Patient Power event was extremely educational, and I am so thankful that I was able to go.

Personal Revelation:

One of the things that was spoken about a lot was the “itching” and “burning” symptoms in PV/ET patients. I’ve never really thought about it before…but apparently not everyone actually experiencing burning/tingling/itching in their extremities when they take a hot bath/shower. I never really considered it a symptom. For 9 years I completely ignored one of the most complained about symptoms in the MPN world (other than fatigue, that is…). I cannot begin to tell you how dumb I felt when I realized that. lol. It just never occurred to me that it was a symptom of my disease.


 

I’ve got a lot more to say on the subject, but I’m going to head off to continue to prepare for this Saturday in San Antonio! Are any of you going? Do you know anyone that’s going? Please share this with anyone you think might be going! I hope to see you all there! Wish me luck, please 🙂

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

Thank you!

Until next time,

Lina

The importance of being a partner in your own health care.

Hello ladies and gents. You may have noticed that I didn’t post last weekend…I apologize for that. I was not feeling very well at all, and just didn’t have the energy to get off my rear and get to my computer to type anything. This was a treatment weekend and as usual, I’m feeling pretty crummy…but I’m only a day late on posting, so I’m going to call that a win!

I’d like to talk a little bit about something I had intended to address during blood cancer awareness month, but didn’t get to…due to my slacking off toward the end of the month.  But anywho…here goes.

I know I talk a lot about being assertive about your healthcare, and I also realize that this is not easy for everyone. Doctors are our caregivers, and are trusted to have our best interests at heart. Now don’t get me wrong I have the utmost respect for doctors, and I realize that doctors went to school for many many years, and learned, and trained, and tested to study/translate data and treat diseases. Sometimes it seems that it can be difficult for doctors to see past that data and to the person that they are treating. This is why it is so important to be a partner in your health care; to be involved and informed about yourself, your progress, and the data that your doctor is watching so closely.  This makes it easier as a patient to know when something isn’t right. When something isn’t right, even when the data doesn’t show that, it is important for a patient to be willing to inform the doctor/health team about it. I personally feel that if you don’t feel that you’re being heard, then you need to keep trying. You are the one feeling the way you do. You have the aches, the pains, the general feeling of something just not being right. No one else is going to feel it for you. If you feel that something is wrong, it is up to you to make it known to the people in charge of your health care. 

As I have said many times before, you are your own best advocate. If you don’t take care of yourself, and stand up for what you feel you need, who will?

That is the end of my lecture now 🙂 I hope you are all having a good weekend, and are all feeling well!

Until next Saturday,

Lina

Blood Cancer Awareness Post 17: Blood Cancer Resources

Today we’ll be talking about blood cancer resources. While there are many, we will be focusing on a few of the big online resources.

First, and my personal favorite: The MPN Research Foundation. Here you can learn more about each Myeloproliferative Neoplasm, find treatment options, patient stories, research studies, and support groups.

Next up is The American Society of Hematology. Here you can find information on ASH meetings, terminology, news, research, and patient resources.

Next is  The American Cancer Society, where you can find information on pretty much all known cancers, health tips, support and treatment resources, available research info, and volunteer opportunities.

Another good one is The Leukemia and Lymphoma Society. Here you can find Disease information, donation opportunities, research and local branch offices

This is only a brief list of resources, but they are very reliable, and contain very good information. i would recommend that when looking for disease information, that you start with these places. They are very comprehensive sources of information.

Tomorrow we will be deviating from my original outline, because I feel compelled to make a post about fatigue. Fatigue is a HUGE problem for MPN Patients, and many other patients as well…but I think I need to post this one asap given some recent experiences I’ve had.

Until tomorrow,

Lina