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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Living Well with MPNs 2015…and a couple of quick announcements

Living Well with MPNs…

Presenters

 Dr. Susan Leclair, PhD, CLS (NCA) Chancellor Professor Emerita and Patient Power Host

Dr. Brady Stein MD, of Northwestern

Dr. Stephen Oh of Washington University, St. Louis

Lindsey Kalhagen, PA of Northwestern

Andi Malitz, Patient Advocate

David Shobrook, Patient Advocate

For the second year in a row, M and I were lucky enough to attend the Living Well with MPNs event held in Chicago. This event was hosted by Northwestern University, Robert H. Lurie Comprehensive Cancer Center, presented by Patient Power. Just like last year, the event started with registration, a little networking with other patients, then into the meeting at 10am.

As the name of the event suggests, the focus is on encouraging us to live our lives as well as we are able. In order for anyone to do this they need to be willing to seek out the things that will help them to live their best life.  Most importantly, one needs to be informed, and not afraid to ask questions.

I know it can be scary to ask questions at times. Appearing uninformed has always been a fear of mine. But that’s the beauty of this event.  We are all in the same boat. We are all either patients or caregivers. We have all felt overwhelmed by the sheer number of questions that we had when we were diagnosed. The knowledge that we are in a room full of our peers makes it much easier to open up about the things that scare us, or the things we don’t quite understand.

There were lots of very good questions asked, and our presenters gave concise, easy to understand answers.  The doctors explained that cognitive symptoms are a lot more common in MPNs than previously thought. As more and more patients have been reporting mood disturbances, it has been more strongly connected to the MPNs themselves. Rather than sending patients from doctor to doctor (leaving us to feel rather like ping pong balls…) doctors are acknowledging that the mood disorders may be more directly connected to MPNs, and are more openly collaborating for treatment with other physicians.

We also discussed the genetic factors of our diseases. There often seems to be a little confusion between something being genetic, and something being hereditary. Our diseases are genetic, meaning they are caused a genetic mutation (JAK, CALR, etc.). That does not necessarily mean our diseases are hereditary, meaning passed from generation to generation.

The answer that seemed to stand out most to me had to be to this question: How should you decide on a course of treatment for an MPN? The consensus among the doctors presenting is that the history of the patient, and the way they are feeling, are more important when determining treatment plans than lab values alone. For instance, an ET patient with platelets in the upper 900Ks, but who has no history of blood clots, headaches, or other thrombotic events, and feels well, does NOT necessarily need prescription treatment. While an ET patient with platelets in the 500-600K range, with history of blood clots, and constant disruptive symptoms, may require prescription intervention.

There are new advances, more research, and better information available every day. This is why it is in our best interest to be as well informed as possible. Without knowledge, how can we expect to Live Well with MPNs? It is our responsibility to be proactive and assertive when it comes to our health. If you are not comfortable with the direction that your treatment is going, then speak up. If you do not feel that your doctor is receptive to your thoughts on treatment, then seek another doctor. We deserve to feel that we are heard, and that we are respected. The doctor/patient relationship needs to be a relationship of mutual respect – it needs to be a partnership.

I would like to take this opportunity to thank Patient Power again for presenting this event, and for all of the information and videos available on their site!

As for my announcements – First I am excited to say I will be visiting NYC for the first time this week. I’ve been asked to participate in a Patient Advisory Board for Incyte. I’ll be there this coming Friday. Not much time for touristing, but I’m pretty excited to be going!

Second, I’ll be going to to San Diego for the Women in MPNs conference coming up in September.

That’s all for now – I’ll post what I can about the events after they happen.

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

Until next time,

Lina

I am not a warrior

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

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

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

Blood Cancer Awareness Post 5: White Blood Cells

Yesterday we talked about red blood cells, and today we will talk about white blood cells. 

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White blood cells, or leukocytes are the cells of the immune system. They are what helps your body to fight infection and foreign matter.

The most common type of white cell is the Neutrophil. Neutrophils live in the body less than a day, so your bone marrow is constantly making them to protect you from infection. Neutrophils are the first responders for microbial infections. High numbers of neutrophils are seen early in the onset of infection.

The next most common type of white cell are Lymphocytes. There are two main types of Lymphocytes. T Lymphocytes (or t-cells), which help regulate the function of other immune cells, and B Lymphocytes (or b-cells) which make antibodies. Antibodies are the proteins  that target bacteria, viruses and other foreign matter in the body.

The final three types of white blood cells are monocytes, eosinophils and basophils.

Monocytes have longer life spans than neutrophils, and are responsible for presenting pieces of pathogens to t-cells so that they will be recognized later.

Eosinophils deal mainly with parasitic infections. You also see large numbers of eosinophils during times of allergic reactions such as hay fever, or hives.

Basophils are also present during times of allergic reactions and are responsible for releasing the chemical histamine.

This is just a very brief overview of the general function of white cells, and their jobs. We will talk more about them as we get more into blood cancers later in the month!

Tomorrow we’ll be talking about my personal favorite blood cells, platelets!

Until tomorrow,

Lina

Blood Cancer Awareness Post 4: Red Blood Cells

Yesterday we discussed Blood Plasma, today we will talk about Red Blood Cells.

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Red Blood Cells, (RBCs) also called erythrocytes, are the most common type of blood cell. Like all of our blood cells, RBCs originate in the bone marrow. They are flexible, oval shaped cells which carry oxygen and CO2 around the body. Hemoglobin, an iron rich protein, is what makes carrying oxygen through the body possible. It is also what makes your blood red. Hematocrit, is the percentage of whole blood that is made up of RBCs.

The production of RBCs is triggered by a hormone which is produced in the kidneys. This hormone tells your bone marrow to produce immature RBCs, which then spend about 7 days, maturing in the marrow. After they are matured, RBCs spend about 120 days in the system.

There is a delicate balance to all blood cells in the body, each type of cell has a proper range. When these ranges get out of whack, that’s when issues arise. Below is the averages used by my lab for each different blood component. Later we’ll go into more detail on what to pay attention to on a CBC.

blood counts

That is all for today, tomorrow we’ll be talking about White Blood Cells!

Until Tomorrow,

Lina