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

 

 

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

Meeting Expectations…or not?

Something I have noticed over the last decade of this ET adventure, is that people are very hung up on labels. I speak specifically of the label of “being sick” right now. Yes, I’m going back to “But you don’t LOOK sick…” again. It’s important to me. Get over it.

I have found that on days that I’m feeling my worst, but still looking “normal” I hear a lot of “Well you LOOK fine…” and the ever popular “Well you don’t look sick to me…” (because…you know…everyone is an MD now…). But then if I am not looking my best, I tend to hear people say things that imply I’m “putting on a show”, or faking it. So, I’m curious…which is it? Am I faking it when I DO look sick, or am I faking it when I “look fine”? At what point is my appearance:actual feeling ratio, acceptable to the general public. More importantly, when did the thoughts of the general public become so important to me? Why do I let it bother me?

Let’s use today for an example: Today I went out to watch a pre-season hockey game with M. This is a big event for me, for a couple of reasons 1) I have been feeling absolutely miserable for the last several days. To the point that I missed several hours of work, because of it. 2) I’d never been to a hockey game before…so it was really exciting. As I mentioned before though, I missed several hours of work because of it…then I went out and had fun? Maybe I wasn’t actually sick maybe I was faking it the whole time?

Oh wait…no I wasn’t. I think what a lot of people don’t understand is that in order to go out at all, or to function as a normal human being, I often have to sacrifice other things. For instance…Saturday, I did ABSOLUTELY. NOTHING. PRODUCTIVE. AT. ALL. There is no way that I would have had the energy to go all the way downtown, walk through the arena, and actually enjoy the event, if I had done anything yesterday. So…yes, I missed a few hours of work this week. I also gave up an entire day of my weekend on the off chance that I’d have enough energy to enjoy myself for a few hours. I know I’m not the only one who thinks about this. Know how I know? Google.

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TLDR: Don’t make judgments based solely on the appearance of others. EVER. For any reason.

OK, I’m done ranting for now. This may have been somewhat disjointed, and for that I apologize. But I just needed to get that off my chest.

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

Until next time,

Lina

 

 

#WigginOutOverMPNs

Ladies and gentlemen, I’m sure we’re all aware that the month of September is Blood Cancer Awareness Month. In order to help raise awareness for our very rare family of diseases, I have started an event that will be ongoing the entire month. I am hoping to get participation – PLEASE PLEASE join me in #WigginOutOverMPNs every #WigginOutWednesday!

Please join me every Wednesday this month for #WigginOutOverMPNs Wear a funky wig, do a crazy hairstyle, even wear a silly hat! Whatever you choose to do, post a selfie on social media, using the hash tags #WigginOutWednesday and #WigginOutOverMPNs Help us raise awareness of this very rare family of blood cancers!

Add me on facebook and I’ll invite you to the event!! https://www.facebook.com/lina.mpn

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

Until next time,

Lina

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

Resolutions…

Today is the 2nd day of 2015, and I cannot begin to tell you the number of times I saw “New Year, New ME!!” or similar statements on social media the last few days. That’s not to say that I have anything against making New Year’s Resolutions, but I have to say that it makes more sense to me to make them uplifting, life improving resolutions. I would think that you would want to set realistic goals goals for yourself, rather than setting an extremely high bar for yourself, then beating yourself up if you do not reach it. I see a lot of people posting their resolutions, and a lot of times they seem bleak, or self-deprecating. Don’t “resolve to get your fat ass in shape”, resolve to become a healthier person, resolve to make healthier choices. Don’t tell yourself the things that you cannot do, but reaffirm every day the wonderful things you CAN do for yourself.

With that in mind, below are my New Year’s Resolution suggestions


1) Resolve to be a more positive person. Each day, attempt to see the bright side of whatever situation you may be in. It is there. It may not always be easy to see, but if you step back, take a deep breath, and look around, you will always be able to find a happy moment.

2) Resolve to be a kinder person to those around you. Maybe each day, go out of your way to reach out to someone you wouldn’t normally talk to. At work, at school, in line at the coffee shop; wish them a good morning, or ask them how their day is. I don’t know about you, but when people do this for me, it always leaves a smile on my face.

3) Resolve to be a healthier you. This could be physically healthier, mentally healthier, spiritually healthier, whatever you feel that you need in your life right now. Take a small step each day in the direction of bettering yourself. Take the stairs instead of the elevator. Take a time out from your hectic day to just relax, and breathe. Pray, meditate, read spiritual writings. Do whatever you need to do to make yourself feel healthier.

4) Resolve to more fully love the life that you’re living. Each morning when you wake up, be thankful for that morning. Each day is a gift and shouldn’t be wasted. Be fully present in your days, celebrate the small victories, sing along with the radio, call and talk to a friend you haven’t heard from in a long time.

And lastly a few resolutions solely dedicated to managing your health care (Come on, you knew it had to be coming…)

5) Resolve to be fully present in your health care. Pay attention during appointments. Take notes. This way you’ll always have that information to look back on after your appointment.

6) Resolve to be a proactive patient. Have a question for the doctor? Write it down. Bring it with you, and make sure your doctor fully answers your questions. If they do not, repeat the question and ask for another explanation.

7) Resolve to be an informed patient. Do research on issues that are concerning you. Now, this doesn’t mean consult random websites on the internet, but there are an awful lot of resources out there for you.

8) Resolve to advocate fully for yourself (be your OWN advocate!!).

9) Resolve to take the best care of yourself you possibly can.

10) Resolve to reach out to a caretaker when you need to.

11) Resolve to NOT feel weak when you DO have to reach out for help.

12) Resolve to acknowledge the strength of character it takes to admit you need help.


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

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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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