Author: linampn

I am a blogger, and Professional Patient. I have a myeloproliferative neoplasm, called Essential Thrombocytosis (or ET). I firmly believe that everyone should be an active participant in their health care. We are our own best advocates!

Living Well with MPNs Review/Recap plus a personal revelation

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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

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Exciting News 🙂 #linasgotnews.

Exciting News :) #linasgotnews

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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

A minor pet peeve of mine…

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So, today I was at the oncologist, and as per usual, I was visited by medical student first. (I am treated at a teaching hospital, so this is a regular occurrence) He was very nice, though he seemed a little nervous. We were talking about the issues I had back in March, and he was asking me about the tests that had been run while I was in the ER. As I told him about the tests (chest x-ray, EKG, CT [with contrast] of my chest, and belly etc), he just stared at me.

When I was finished he says “Wow…are you a nurse?”. Now, I’ve heard this more than once, and normally I let it slide. But for some reason it really irked me today. I told him that no, I’m not a nurse, I’m just not stupid.

I am tired of those in the medical profession assuming that the rest of us are completely ignorant. I’m tired of the look of awe I get when I tell the medical professional that I am NOT a nurse. I am tired of having to explain the fact that I am a relatively well educated, active participant in my treatment, and that I want to be a partner in my health care. These are things that shouldn’t have to be explained. I realize that not everyone is as passionate, or as assertive as I am with regard to their health care knowledge, but I have to presume that I’m not the only person like this out there. That being said, my suggestion to medical professionals is simple; Rather than implying how shocked you are that I know anything about my medical treatment, maybe just participate in the conversation? Don’t express how surprising it is to come across a patient who knows what she’s talking about. Just continue the appointment. I’m not there to get a pat on the back from some godly-doctor-in-training. I’m there to get advice, learn more, and go about my day.

OK…rant over. For now.

On the plus side, the appointment was otherwise pretty good. My platelets are holding steady around 630,000, while the norm is 150,000-450,000…when you consider I used to be around 1.5million, that 630k looks pretty darn good. All the rest of my numbers are looking good too. WBC, RBC, HGB, HCT all within range. On the lower side of normal, but fine. We are going to continue abstaining from the PegIntron for now. I’ll go for monthly CBCs until my next appointment in August, and if we notice that my platelets are getting close to 800,000 or above, we’ll start the PegIntron again. I’m definitely not looking forward to that, because it will mean starting from scratch with all the extremely unpleasant (that’s putting it mildly) side effects, but we’ll cross that bridge when we come to it.

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!

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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

Recent Adventures…

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So this post will be a combination personal update/very specific question that hopefully we can get a few responses to…let’s start with the update…

So, last Friday 3/21/14 was a treatment night. Just like always I prepared it, injected it, and went about my evening. The side effects came, as they always do with the headache, body aches, nausea etc, but then a new symptom started – palpitations and fluttering in my heart. I ignored it for a bit, thinking it was  fluke, but it kept going for the next several days. The  headache, body aches, nausea also increased in severity rather than decrease as it usually does. It increased to the point that i couldn’t even make it in to work on Monday.

All of the symptoms persisted the next day, but I went in to work anyway. Not much to do at home other than feel bad. At least at the office there are things to distract me from how I felt. As the day went on Tuesday, the palpitations increased, and I was getting dizzy, short of breath, and very shaky. So I called my doctor’s office and they suggested heading to the ER just to get checked out. So after work M and I went to the ER. Got hooked up to an EKG, IV, BP, Pulse Ox, did a CT, and a chest x-ray…all results came back normal. Which is good and bad. On the one had it’s good to know that there aren’t any serious issues, but on the other there is no obvious cause of the weird symptoms.

This leads me to think it’s a problem with the PegIntron itself. I called Merck and reported the issues that I was having, and they are tracking the lot number to see if anyone else has reported this too.

On to the question. Are there any of you out there taking PegIntron Alpha 2B that have had similar issues recently?

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

Until next time,

Lina

I am not a warrior

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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

The 7 Habits of Highly Effective Patients

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1) Always remember…To explore all options.

a. This may mean shopping around for doctors. If the practice you are in has not met your needs, then you are entitled to a practice that will. You do not need to feel obligated to stay.

b. Treatment options may be available that you have not tried. Keep yourself educated about the options that are out there, and don’t be afraid to ask about them during your appointments.

c. LEARN! LEARN! LEARN! Education=Empowerment!

d. Take notes! Either write everything down, or if possible record your appointments. When I first started on this little adventure 9 years ago, I would come home look back at my notes and see random disjointed comments and wonder “What the heck was that about?!”. Having a record of things said during your appointments can really make later reflection easier. It’s very tough to remember everything said during an appointment without taking notes.

e. Make note of your experiences. Things that happen to you outside of your appointments may be very important for the doctor to see. Symptoms, illnesses, general “weirdnesses” as I call them. These are all things that you may want to keep track of.

2) Always remember…To keep accurate records (See “The Infamous Binder”)

a. Keep copies of test results. Your doctor’s office will almost certainly be happy to provide you copies. My doctors know from experience that I will want a copy of my CBC, so they have a copy for me when I get there.

b. Keeping a binder will help you to keep track of appointment dates in reference to the rest of your notes too. It’s nice to have an accurate timeline of the different things that happen during the course of your treatment.

c. The binder is also a great place to keep the questions, and also the answers to those questions that you may have. This way you can go back over the Q&A at your leisure and review them as needed.

3) Always remember…Don’t be afraid to “look silly”.

a. Always Ask Questions!!! There is no such thing as a silly question when it comes to your health.

b. If after asking a question, you still don’t quite understand, ASK AGAIN. The doctor is there to guide you, and help you to understand your situation. Ask them to explain it in a different way if you need to, but ask again.

4) Always remember…To Find Your Voice

a. Assertive ≠ Pushy.

b. There are some people who think that by asking questions, they are “bothering” their health care professional. This is not the case, and if you feel that it IS the case…then please revisit rule 1) point a.

5) Always remember…Do NOT let yourself be rushed.

a. If you are not done with an appointment, still have questions, or are still not satisfied with the answers, tell that to the doctor, and request that they stay. If they are unwilling to do so, then I again refer you back to rule 1) point a.

6) Always remember…Doctors are service providers.

a. Therefore if you are unsatisfied with the service you are receiving, make them aware of it.

b. If nothing changes, then now is another time to refer back to rule 1) point a.

7) And most importantly, Always remember…Life does not stop just because you have an illness. Part of being an empowered patient is being fully present in situation. You still have to maintain your relationships, your job, your friendships, your finances etc. In order to do this you must be relaxed and in command of your all parts of your life and your treatment. I realize that this is much easier said than done, but it is vital to both your emotional and physical health.

As always, be your own advocate and be persistent. If you don’t take care of yourself, no one will!

Lina

Déjà vu all over again…and a question for readers…

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So, in my last post I told you about my pneumonia. Well…it’s not gone. I’m on round 2 of antibiotics and steroids. I have had this off and on since November. That’s an awfully long time. I have been short with M, because I’ve felt so icky…which really isn’t fair. Also, it has interfered with my (already lacking) social life, and my work life. …my question to you, dear readers, how many of you MPNers have a hard time getting over things, or heal slowly? Healing either from sickness, or injury? Let me know in the comments below, please 🙂

Until next time,

Lina

Tis the season…

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Tis the season to be siiiick, fa la la la la, la la la la.

So…after 3 weeks of what I thought was just a nasty cold, I finally went (after some mild guilting from my coworkers and family) to see my GP. Turns out I actually had walking pneumonia.  Hence the recent blog-slacking. I should have known better. I should have gone to the doctor when it started, but instead I decided to be stubborn and assume it would go away.

Luckily it’s on its way out now, and hopefully it will stay gone this time 🙂

I fully intend to write an MPN related article this coming weekend, so please stay tuned!

Also, (even though I may not have earned it recently, given my slacking…) please consider endorsing my nominations from WEGO Health! http://awards.wegohealth.com/nominees/linampn-959

Until this weekend,

Lina