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

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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

OVAC Lobby Day Review

OVAC Lobby Day: 7/7-7/8

This may be a little haphazard, but I’ll try to keep it somewhat organized.

The OVAC Lobby Days took place Monday July 7th and Tuesday July 8th. This is the first time I’ve done any type of lobbying, and was therefore an overwhelming, educational, terrifying, overall exhilarating experience.

OVAC, One Voice Against Cancer is a collaboration of non-profit organizations working together to try to find cures for cancer. OVAC has representatives from all across the country, every walk of life, all cancers. We all spoke of our personal experiences, which are very different, but our goal was the same, so we truly were speaking against cancer with One Voice. There’s something oddly uniting about the subject of cancer. We all know someone who has been touched by it in some way. Each of us at the event had our own personal connection to cancer. That is what brought us together.

Monday started with registration, and for me, a sort of awkward wandering around in the lobby until a few of us got to talking. The ladies I befriended in the lobby each shared their own personal stories. One of the ladies told me about her mother who had bladder cancer. Luckily she had responded to treatment, and is doing quite well now, but the experience is what inspired her to become an activist for BCAN (Bladder Cancer Advocacy Network)The other young lady I had the privilege to meet had very recently lost her sister to brain cancer. The pain was still so visibly fresh for her, and I admire her so much for having the strength to join the Brain Tumor association and tell her sister’s story.

After getting to know one another we went in to begin our training. OVAC Lobby Day 2014: Training DayThere were 88 participants from 30 states, and I’d say about 1/2 of us are newbies, so I was not completely alone 🙂 During training we were given 3 very specific goals, or asks; the end goal is of course making cancer research and prevention a top priority, thereby finding better treatment options, and hopefully cures. Specifically though we were asking for 1) $5.26 billion to be provided for the National Cancer Institute (NCI) 2) to ensure a proportional increase to NCI’s funding when there is an increase in the NIH’s funding, and 3) $510 million to be budgeted for the CDC Division of Cancer Prevention and Control.

These are pretty big things to be asking for, and pretty intimidating to be asking political leaders for them. But who else should we speak to other than the people with the power to help make the changes we are asking for? To speak to the decision makers, to tell them what their constituents want, and need; that is why we were there.

It was stressed to us during training that making a connection with the representative, congressperson, or staffer is a good way to start. Tell them where you’re from; down to the street or the neighborhood, then tell your story. Grab their attention; remind them where they are from. If you can make an emotional connection with them then tell them your story, then hopefully they will remember you better.

So with the goal of being remembered in mind, I plotted out a few ideas for the following day. Knowing that my nerves may get the better of me, I decided that it may be best for me to focus on the emotional aspect of our presentations. I’ve always been a nervous test-taker, and to me trying to remember the facts and figures felt very much like a test. I often get tongue tied when put on the spot, but I knew there were certain facts I knew I’d get right. I decided to focus on my story; when I was diagnosed, what my disease is, the treatment options available, and also the cost of said treatments.

I was in a very small delegation from my state. VERY. SMALL. There were only two of us. So our meetings were rather short. 20140712_140034We started the day on the senate side of the Capitol. 20140712_140114We met with a staffer from Senator McCaskill’s office, and from Senator Blunt’s office. After the meeting with Senator Blunt’s office, we had lunch, then headed over to the House side. 20140712_140123There we had a meeting with Ann Wagner (My state Representative) and a staffer from Sam Graves’ office (my fellow Missourian’s representative) All of the presentations on Tuesday, while brief were very meaningful.

gravois-20120210-00130My favorite part of the presentation is when I would start telling them about PegIntron, the medication that I have had the most success with. At this point I would pull out the box of meds that I brought with me, place it on the table in front of me and say “This drug is not yet FDA approved for use in MPN patients. I have been denied 3 times by my insurance company on the grounds that my purposes are “off label”.  This box costs $2000. It contains ONE dose of medicine. I take this once a week. That’s $104,000 per year for however many years I’m lucky enough to remain alive.” That tended to leave a strong impression on the folks I was speaking to. And then I would start to work in the asks. “With better funding for research, better treatments could potentially be approved for patients. More accessible treatments, mean healthier, more productive constituents.”

 While I was the only person I know of that was there representing MPNs, I am hoping that my presentation was memorable, not just to our elected officials, but also to the other participants. Just about everyone I spoke to had never heard of MPNs. So I’d like to think that I helped educate some other members of the cancer community.

I’m realizing now that I’ve done an awful lot of rambling, so I will leave you for now 🙂 Tomorrow I’ll be posting the mind-body techniques I referenced in my last post!

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

Until next time,

Lina

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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

Exciting News :) #linasgotnews

I promise to give a review of the Living Well with MPNs meeting…just not in this entry. Unfortunately the laptop I started writing that article on is out of commission at the moment. As soon as it is back up and running, I’ll post that one…for now though…On to The News I tweeted about the other day!!!


Part One

I have been asked by the MPN Research Foundation to attend and present at a meeting in San Antonio, Tx!  The meeting is put on by Nord (the National Organization for Rare Diseases), and is for patients and medical professionals. I will be speaking about the need for funding for research, and hopefully be able to share my story with other patients, network, and make some new friends! Are any of you going to be in San Antonio, Tx for the meeting next weekend? It’s Saturday, June 28th, and it’s free! Click on this link for more information, and to register!

Part Two

In addition to the NORD meeting next weekend, I have also been offered the opportunity to attend Lobby Days in Washington DC with the wonderful people from the MPN Research Foundation, and the OVAC (One Voice Against Cancer). The event will be July 7th and 8th. At this event I will be speaking about the need for federal funding for cancer research, my personal experiences with my cancer. From my understanding, the attendees will be in small groups with other patients, and speaking with congressional aids. The event will take place over 2 days, and from what I’ve seen of the itinerary, it will be a pretty busy couple of days!


Those of you who know me personally are probably aware that I have always been terrified of public speaking. However, as nervous as I may be, I can not even begin to express how very excited, thrilled, and grateful I am to have been asked to attend these events. I would like to take this opportunity to thank the MPN Research Foundation for their trust in me, I will do my very best to represent the group, and the subject matter to the best of my ability!

My strongest passions in life are patient advocacy, and promoting the education of patients. I am so excited to have the chance to do just that over the next couple of weeks!

This time 3 years ago, I had attended one patient event, since the time of my diagnosis…this summer I’m attending 3 patient events in a month!

I apologize for the raving/rambling here…I am just so very excited about the upcoming events. I am hoping that some of you will be there! Please comment and let me know if you will be in attendace!

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!

So…I know I said my next blog was going to be about fatigue…Sorry, but it’s not going to happen. Not right now at least. Instead I’d like to discuss something about which I am really excited!

Last summer I was lucky enough to go to the Chicagoland Patient Support Group meeting. It was extremely informative, and I had a great time meeting so many other patients! It was a wonderful feeling being in a room full of people who understood how I felt, and who had experienced the same things as me. I am excited to say that this summer I will be attending another MPN event in Chicago.

The MPN Research Foundation and Patient Power are Hosting an event on June 7th.  Living Well with MPNs. The event will include review of the latest research, information on planning treatment, and one of the things I’m most excited about is the opportunity to meet other patients. Presenting at the event will be Dr. Brady Stein of Northwestern, and Dr. Alison Moliterno of Johns Hopkins.

I can’t wait for the event! I plan to try to video some of the event (if that is allowed, of course). I will also do a review/recap of the meeting  like I did last summer.

Are any of you going to be there? I hope so! I’d love to meet some more fellow-MPNers 🙂 Hope to see you there!

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

Until next time,

Lina