My relationship with “Maybe…”

It’s a simple enough word. Not quite yes, not quite no – just lands somewhere in the middle. I find myself responding to event invitations with this word on a fairly regular (read: nearly always) basis.

I almost NEVER go out after work, because it is incredibly rare for me to have enough energy left at that point in the day to be any fun. Weekends are generally my only opportunity to have a social life, and even that is rare. Saturdays are the only day I feel confident in committing to, as a rule. I know that I can have Sunday to recoup if necessary. I always feel so guilty when I turn down event invitations – I get eye-rolls, and “Yeah, we figured you wouldn’t want to come”. What people don’t understand is it’s not an issue of not wanting to, it’s an issue of knowing that, unlike most people my age, I have to conserve what little energy I have, so that I can meet my responsibilities.

It’s difficult to explain to people who don’t experience energy (or lack there of) in the same way that I do. I get it, I’m only 31. There is seemingly no reason for me to turn down opportunities to go out and have fun. Trouble is that I do not have the same energy levels that the average person does. There are several analogies for energy…the spoon theory for one, my own sandbag theory of energy… but suffice it to say, I and my fellow MPN patients know that fatigue is the number one symptom that we have to deal with.

For any non-patients out there imagine the following: No matter how much you sleep, you never feel rested. When you do get the opportunity to sleep, it won’t come easy. All day you feel so tired, yawning, struggling to make it through the work day, only to get home, and the moment your head hits the pillow feel wide awake. Or better yet: You fall asleep instantly, only to wake up to pain a couple hours later, and then be stuck awake for hours after, trying to ignore the pain, but it is the only thing you can focus on. And this is Every. Single. Night.

This is incredibly frustrating for anyone, but especially frustrating as a relatively young patient, struggling to live life with their peers.

Long story short, I am tired. Tired of saying “maybe” all the time. Tired of being tired.

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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Back to the Blog…

Well, here we are again. Another 6+ month absence from my blog.

I’m not going to lie, I honestly just haven’t felt as though I have much of value to say, over the last several months. Been a little down, and uninvolved in much lately. But I’ve decided that is going to change.

Let’s do a little update:

My full-time job is very busy, which doesn’t leave me a whole lot of energy after I get home from work to feel like writing. When I do get a normal weekend, all I have felt like I want to do is rest, and try to gather enough energy to start all over again on Monday.

On the topic of energy…I’ve recently started working out again, after WAY too long of being a lazy bum. Nothing big, but using the weight bench, treadmill, kettle bells, and a little but of stretching/ab work on the floor. After only a couple weeks, I must admit, that I’m already feeling my energy levels increase…It really does work. For me anyway…I’d also really like to get into doing yoga every night again…anyone interested in participating in another round of #virtualyoga with me? Yea, nay? Perhaps a twitter poll is in order…if anyone is still even following me these days lol. Yeesh. I’ve been away forever :-\

This coming Wednesday, I am going to be adding on to my shoulder tattoo (sorry, dad 😉 ). More flowers (That’s kind of my trend). For anyone wondering, my hem/onc is fine with me getting tattoos. I’ve never yet had an issue with them (Currently have 3). Speaking of my hem/onc…

I have a follow up with him on Thursday (02/15/18). So we shall see where we stand these days. 6 months at my last appointment, all was…stagnant. No ups, minor downs…spleen still too big, and irritating.

That’s about it out of me for now. I’ll update you again this week with regard to the #virtualyoga, the tatoo, and the hem/onc 🙂

As always, you are your own best advocate, if you do not take care of 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 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

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 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 14: Polycythemia Vera

Yesterday we started talking about MPNs, just a general overview. Today we will be talking about Polycthemia Vera, or PV. This is again a re-post from earlier.

What is PV?

You may remember in my last issue regarding MPNs as a whole, over the next few weeks I plan on breaking down each of the 3 main MPNs (PV, ET, and MF).

 I will start with Polycythemia Vera(we will be addressing Primary Polycythemia).

PolyCythemia Vera

Poly-Greek for many

Cythemia(Made up of 2 words) Kytos – Greek word meaning Cell and

Haima – Greek word meaning Blood.

Vera – From the word Verus, meaning true.

To sum that up: Many blood cells floating around in the blood stream.

PV affects all of the hematopoietic bone marrow elements, meaning all the blood cells produced in the marrow are increased. This can lead to a variety of different issues and symptoms including, but not limited to headaches, itching(unique to PV), dizziness, abdominal pain(due to enlarged spleen or possibly liver) increased risk of blood clots, and stroke.

As I said in the issue before, each of these MPNs can be very difficult to diagnose, as the symptoms can be difficult to pinpoint, and often lend themselves easily to a variety of diseases. I think I will go through and answer the same some of the same questions as in the first entry, applying them to PV.

How are you diagnosed with that disease/condition/thing?

How do they treat it?

When will it be cured?

As with most MPNs, PV can often be discovered after some other event/illness/diagnosis. Regardless of how the disease is initially discovered, there are several criteria that must be present to help verify which MPN you are dealing with. Most commonly diagnosis happens after a series of blood tests; Complete Blood Count (CBC), Comprehensive Metabolic Panel (CMP), and often Bone Marrow Biopsy (BMB). What the doctor is looking for in aCBCis an abnormal increase in blood cell amounts. Red cells, white cells, platelets, everything. With a BMB your doctor will be looking at bone marrow abnormalities and genetic markers in the marrow.

Treatment for PV varies by patient. Treatment ranges from watch and wait, or phlebotomy, to prescription medications like Hydroxyurea or Anagrelide(More common for ET patients, but  PV can take it as well). Phlebotomy is basically blood letting. When counts get too high, a patient will go to the clinic, and a unit or so of blood will be removed from their body, thus lowering blood counts.

As for a cure, this is the same as with any MPN. There is no “cure” per se. The disease can be managed thru treatment, and some can live a relatively normal life with little to no interference from the disease. However, since every patient is different, everyone will experience a different set of symptoms of the disease.

I do not claim to know all there is to know about ANY myeloproliferative neoplasm for that matter…. I am sure that I missed something here, but this is just my general understanding, and the way I would explain it to someone who knew nothing about PV. I would like to take this opportunity to invite PV patients to add to this. Particularly things like “What do you wish you had known at diagnosis that no one told you?”

Tomorrow we will be talking about Essential Thrombocytosis (ET)

Until tomorrow,

Lina