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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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

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 blasĂ© 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

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

Should I be Scared?

(I promise the title of this entry will make sense eventually…)

So this past Wednesday I had the privilege of attending the Chicagoland MPN Patient Support Meeting. (Thank goodness for understanding bosses, who let you off at the {relatively} last minute, and an awesome mama who made the trip with me! Woohoo!) This entry will probably be somewhat haphazard and disorganized…but I’ll try to keep it logical 🙂

Since there is nothing like this around where I live, I had absolutely no idea what to expect going in. Honestly, I was kind of expecting a rehearsed spiel about the family of diseases and generally how they are treated, then maybe the speaker would open the floor to questions… I happily found out that I was totally wrong.

Dr. Stein gave a short intro about himself, and then opened the floor to questions from the group. He took time answering all of our questions as thoroughly as possible, was extremely engaging, informative, friendly, patient with all of us and generally awesome! I’ll go over the questions that were asked shortly, but I HAVE to rave about how wonderful Dr. Stein is.

So, I went to Chicago 2 years ago to see him at Northwestern when I was having trouble with my doc/treatment here at home. I wanted to get a 2nd opinion and fresh eye on my things at the time. Northwestern is a large facility, and I’m sure Dr. Stein sees hundreds of people a year. After he was done speaking at the meeting Wednesday night, I went up to ask him one last question, and to thank him for speaking with us. Before answering my question he says “You came to see me, didn’t you? Two summers ago? You were there with your husband, right?” He remembered me. Remembered why I was there to see him, what we talked about, and who I was with, heck…he even remembered my e-mail background. That is amazing to me. With everything he does, the committees he is on, the meetings he attends, the patients he sees, and still has the ability to remember little details about people he has seen ONCE 2 years ago…I have no idea how he does it. But I was extremely impressed. If anyone is looking for a Hem/Onc in the upper Midwest, I highly recommend him!

Now, on to the questions, I’ll try to remember all of them…there were a lot…and I did take notes…but I may miss some.

1) Jakafi. How’s it doing/results? He gave a general rundown of its performance, as he has seen so far: about 50% of patients have shown spleen shrinkage with use of Jakafi, which…for those of us with large spleens, that sounds awesome. It also does seem to relieve fatigue, itching, sweats and pain. On the down side, the blood counts do seem to drop some initially, but they generally rebound fairly well.

2) Risk of blood clots? With ET and PV, typically we think about platelets being the big cause, but we should also look at white count too. Apparently a high white count can also contribute to blood clots.

3) Disease progression? For ET patients, the risk of progression to MF goes up to 10% after 15 years. With PV I believe it was 15%.

4) One of the people in the audience is approaching the possibility of stem cell transplant, and Dr. Stein addressed some concerns: A transplant is a very high risk, but high reward procedure. Even though it is the only “cure” for any of these conditions, it is NOT recommended for ET/PV patients at the moment, only MF. The timing of a transplant is very difficult. At this point it is a very reactive procedure, as opposed to proactive. You do not want to do it too early, or too late, but finding that perfect time can be a challenge. There are 4 scales used to help determine the viability of a transplant. Apparently one of the things that helps blood cells rebound after transplant is a smaller spleen, which could explain why potential transplant patients are often prescribed Jakafi prior to the procedure.

5) Bone Marrow Biopsies? PV patients do not require a BMB for diagnosis. ET and MF however do. As for frequency of BMBs, that varies based on blood counts, direction the disease seems to be going, and doctor’s preference, really.

6) Fatigue? This is the enemy of all MPN patients. Fatigue is a symptom of the diseases, but it can also be a side effect of treatment. If you get to the point that your life is being disrupted by your fatigue (one of the guests at the meeting said they recently had to resign from their job due to their level of fatigue!), Dr. Stein recommends seeking other treatment options. Also…whole body wellness is hugely important. It is a viscous cycle though, and I don’t know about the rest of you, but when I’m tired/hurting/feeling blah the last thing on my mind is getting out to the gym/going for a walk/exercising/whatever. Consciously I know that if I get up and move I will feel better, and have more energy, but it’s really hard to make yourself do that.

Now…on to explaining the title of my entry. One of the patients who was there asked something along the lines of “So…I’ve read a lot about this thing, and a lot of it is very doom and gloom…Should I be scared?” This question really stood out to me. You may have noticed while reading my blog that I am one of those annoyingly assertive patients who wants to know everything about my disease/treatment…I realize that not everyone is like this. But I really feel that you are doing yourself a disservice to not at least understand the basics of your disease. That does NOT mean you should jump online and rely on google to teach you what you need to know. There are a lot of really scary things that can happen with these diseases. I could end up with Leukemia, I could have to have a stem cell transplant, I could get a blood clot, have a stroke etc etc. Here’s the thing though…I could step of a curb and get hit by a bus too. If I read/believed everything I see online or in statistics I would never leave the house. Should I be scared? No. Should I be occasionally cautious and conscious of the potential issues, absolutely. I am not a doctor, I am not offering medical advice in any way, shape, or form. However: I strongly recommend living your life as fully as you possibly can. Don’t worry about things that MIGHT happen. Go with the flow, deal with the real issues as the present themselves, but don’t go borrowing trouble where it may not even exist.

All in all this meeting was fabulous, and I am so thankful I got to attend! I am going to be talking with MPN Research Foundation to try and find out how to form a support group locally…I’ll update more on that as it happens 🙂 Ok…I think I’m done blathering now, I hope that made sense as it tumbled out of my brain lol

I know I say this all the time, but I will say it once again: You are your best advocate. If you do not stay on top of your health care, then who will?

Thanks,

Lina