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

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