This has come up several times in the different message boards I have participated in over the years: Do we have cancer, or not? (Please note: the factual information in paragraph 3 was gathered for this article – http://www.ncbi.nlm.nih.gov/pubmed/19472396?dopt=Abstract – The opinions expressed throughout, however are my own. Please feel free to leave comments with your take on this subject!)

When you look up the word “Neoplasm” on the internet (an activity during which extreme caution should ALWAYS BE EXERCISED), the first choices that come up are “NCI Dictionary of Cancer Terms”, and “Characteristics of malignant neoplasms”, among others. People see “Cancer” and “malignant” and immediately get scared. Here’s the thing though…Myeloproliferative Neoplasms, MPNs, prior to 2008, were Myeloproliferative DISORDERS, or MPDs. 

What exactly happened in 2008 to so drastically change the very existence of these diseases? Well…the World Health Organization reclassified them. Yep, That’s all. In 1951 When William Damashek described the disorders; he included CML, PV, ET and PMF in the group. At this time they were classified as Disorders. In 2001 the WHO gave them a broader heading of Chronic Myeloproliferative Diseases (CMPD), and included chronic neutrophilic leukemia, chronic eosinophilic leukemia/hypereosinophilic syndrome (CEL/HES), and “CMPD, unclassifiable”. Then in 2008 the WHO reclassified things a bit again. The term CMPD was just replaced by Myeloproliferative Neoplasm, or MPN.

You didn’t suddenly go from NOT having cancer, to HAVING cancer…the disease in itself, the proliferation of cells that do not belong where they are, is the fundamental meaning of “cancer”. The very definition of cancer is the uncontrolled growth of abnormal cells in the body. Our little family of diseases fits pretty well in that group when you look at it that way, doesn’t it?

I like to think of it as trying to organize your sock drawer. You have white socks, black socks, red socks, blue socks, those are easy to organize. But what about the multi-colored argyle socks? Where do you put those. Or the red white and blue striped socks? Or the holiday themed socks? How do you classify things that fit so many different headings? You use broader definitions. This is just what makes sense in my goofy mind. 

I know that cancer is a scary word, but you could call it a disorder, a neoplasm, a disease, or Fred, if it makes you feel better, It will not change the fundamental nature of your disease. What matters is how you approach it. As long as you are approaching your situation assertively, and proactively, and educate yourself as well as possible, the classification of the disease shouldn’t mean much.

 As always, you are your own best advocate. If you do not take care of yourself, who will?

Until next time,

Lina

Hello there all 🙂 

Little update and a question…

Update – I’m feeling much better, still icing my backside off and on. Bruised, and sore. But feeling better. Now I’m just starting to stress out about the results of the test. But hopefully they’ll come through soon. I’ll let you know what they are as soon as I hear 🙂

Now for the question: I’m thinking about doing the Video Blog and posting to youtube. I would ask for subjects here, and then record a video and post it to my youtube channel. Would anyone have any interest in that? I would still write here for the most part, but an occasional video post might be interesting. I’ll set up a poll, but please leave a comment with your opinion, and also suggestions for a topic you’d like discussed 🙂

Thanks all!

As always, you are your own best advocate. If you do not take care of yourself, who will?

Until next time,

Lina.

I’m home, resting, but just wanted to post these videos. If you’re squeamish, I’d recommend not watching. The video is in 2 parts. My husband recorded this for me. Part One and Part Two.

Nap time now

Remember, you are your own best advocate. If you do not take care of yourself, who will?

Until next time,

Lina

I’ve been thinking too much about the biopsy on Friday, and making myself nervous. I’m the kind of person who feels more comfortable with situations when I fully understand them, or can explain them fully to someone else – so please bare with me while I do that now with regard to bone marrow biopsies/aspirations 🙂

A bone marrow biopsy is used as diagnostic criteria for blood, and or bone marrow diseases, and some cancers. Typically the sample will be drawn from either the pelvic, or the breast bone.

The bone marrow aspiration is typically performed before the biopsy is done. This is performed by inserting a needle into the bone, and using a syringe to withdraw some liquid marrow. Another needle will be used for the biopsy portion of the event.

The biopsy itself involves the removal of the solid portion of bone marrow. This is done using a larger gauge needle. Once the large needle has been inserted into the bone, the center of the needle is removed, and the hollowed portion is pushed deeper into the bone. This hollow section of needle is what captures the sample of core, or marrow required for testing. 

A wide variety of diseases can be diagnosed using these tests, including but not limited to a plethora of types of leukemia, or lymphoma, multiple myeloma, my personal favorite (just kidding…) essential thrombocytosis, myelofibrosis (What we’re on the lookout for) and myelodysplastic syndrome. 

Now, here’s where I start getting amused. The information I’m using for source material (which I will cite at the end of this article, I promise) was undoubtedly written by someone who has never experienced this test. Under the “How the test will feel” section…they say “you MAY feel a brief, sharp pain when the liquid (aspirate) is removed”…to me that was kind of like when the gynecologist says “Now just a little pressure now…” (my gynecologist is a guy…pretty sure he doesn’t actually have a clue what a speculum feels like…) but back to the subject….As someone who has had this done without anesthetic, I can assure you it was NOT brief. It was a LONG sharp pain, which seemed to radiate down my legs, and up my spine.

Thankfully I will be receiving some anesthesia/pain relief for this test. OK…I’ll end now with this little info picture for anyone who may be curious about the anatomy of your bone marrow 🙂

Information for this article was gathered here  and here

As always, you are your own best advocate. If you do not take care of yourself, who will?

Until next time, 

Lina

So I had an appointment with my hem/onc this past Wednesday (8/20). As is customary at these appointments, the physical exam was performed by a med student. Pretty sure that other than the handshakes at the beginning and end of the appointment that my doc has not touched me once in the 8 years I’ve been seeing him. Is that what it’s like for you guys too? Just curious 🙂

Anywho…after listening to my heart and lungs, he decided it was time to poke around my abdomen. He lifted up my shirt, and just sort of stared at my belly for a bit. I think I mentioned before that the ribs on the left side are pretty distended/misshapen, presumably because of the size of my spleen. But this guy was surprised by that. As he starts poking around he’s trying hard to find the end of my spleen…he finally seemed satisfied that he had found it. Down by my navel…Now for those who may be unfamiliar with where ones spleen normally should be……The spleen is on the upper left side of your abdomen. Generally completely housed by your rib cage. See image below…

As he was poking around trying to find it, he seemed very surprised that it was as large as it is. How do I know? He muttered “holy shit” under his breath…soo yeah. Fairly indicative of surprise, I’d say. 

After he was done with the physical exam, he went and conferred with my doc. When he came in, we exchanged the usual pleasantries. He asked how I am, how’s work, how’s my husband etc etc. Then he starts in with “So how are you feeling…?”. At which point I pulled out The Infamous Binder, flipped to my “new/recurring symptoms” section. There is a lovely long list of things – Headaches, fatigue of course at the top, but also Night sweats, itching, fevers, body aches, bone and join pain etc etc. And as I’m reading off my list, I can tell he’s thinking about what he’s going to say, so I finished my list with “And I think that it might be a really good idea to get a new biopsy done, since all these changes, plus the lowering blood counts seem to be indicative of something new”. And he just nodded, and said he felt that was the best course of action. If nothing else we’ll get a new baseline. PLUS we’ll get the results of the genetic testing that I’ve been curious about for so long 🙂

So, this Friday (8/29) I’ll be going in for my 2nd bone marrow biopsy. I WILL get some sedation for this, thankfully. The first one I ever had was pretty awful. Just a local to numb the skin…nothing more. That was not cool. We should get the results by the following Friday.

I’m thinking about attempting to either tweet or blog DURING the biopsy (if they allow it, and if I’m not too goofy…) We’ll see how that goes. M will be there, and has agreed to take pictures for me. I’m one of those weirdos who is REALLY intrigued by medical procedures, especially when they are being done to me. 

But that is enough rambling from me for now.

You are your own best advocate, if you do not take care of yourself, who will?

Until next time,

Lina

So today is the 3rd day of a terrible migraine. Started with visual aura as always – picture the fractals of a broken mirror, and brightly colored, chaser style Christmas lights along the edges of each. This typically takes over my vision entirely. Starts out small, then increases to the point of not being able to see at all. After that my peripheral vision is usually gone for the rest of the day, on whichever side the aura started. Wednesday it started on the right, so my right side peripheral vision was gone the rest of the day. Which made driving home from work quite the (ill advised) adventure. I did go to work Thursday morning, but by 10 AM I couldn’t take it. The pain was really bad. Now I have a pretty darn high pain tolerance, so when I say it hurts, I mean to the point of being in tears, hurts. Thankfully I have a very wonderful boss, who could see how miserable I was and let me go home. I got home yesterday, slept pretty much all afternoon, the short spans during which I was awake, were very painful, spent mostly either crying or vomiting. The pain was (still is) terrible. One of the worst migraines I can remember having. The last one that was this bad, I was still living at home, and my mom actually took me to the E.R. 

I finally broke down and took a vicodin in hopes that it would help. All it really succeeded in doing is making me feel really dumb. Migraines make me stupid to begin with, add something like that and I’m totally useless. 

So now, getting to the point – My question for ET patients specifically – Do you all have migraines like this? Is this an ET thing?

Off to bed for now.

You are your own best advocate, if you don’t take care of yourself, who will?

 Until next time,

Lina

I promised you the “mind/body” techniques, and I will post them for you at the end of this. But for now I just needed to do a quick bit of rambling. So over the last several weeks my blood counts have been dropping, and I just haven’t felt “right”. Do you know that feeling? Where you can tell that something isn’t as it should be, bit you don’t know what that something actually is? This last week for example, Monday started with a migraine. Not completely out of the ordinary. I get migraines fairly frequently. But the rest of the week continued getting stranger. Wednesday I was so dizzy and nauseated I could barely see, I had to leave work. (driving home was quite the adventure :-\)I was too weak/tired to get off the couch or out of bed the rest of the day. The rest of the week I felt basically the same way. I have been very tired, disoriented and weak. I’m tired to the point of being unable to function normally. Just feel like I’m blundering around stupidly. Which will hopefully explain the disorganization of the previous paragraph. Please forgive me. On to the original purpose of this post…

Below are the techniques shown to us at the NORD MPN Meeting in San Antonio by Sharon Cohan of the Leukemia Lymphoma Society. I urge you to try them when you’re feeling stressed or sick. I’ve been trying the relaxation breathing off and on today, and it really has been helping a bit.

• Mind-body techniques are coping strategies that work well for many people 
  with chronic illnesses, including cancer. 
• These techniques have a number of potential benefits.
• They reduce stress and help to restore a sense of control over both your body and your emotions.
• They can help relieve or reduce distressing symptoms, including pain, 
  anxiety, and nausea.
• They can be done whenever and wherever you want to do them. Once you learn them, they belong to you.
• There are several mind-body techniques you can learn.  You can choose the ones that feel
  right for you.  We have already practiced 2 of them during this workshop.
• Deep breathing, the first technique we practiced, is designed to help promote relaxation and focus the mind.
• With progressive muscle relaxation, you tighten and then relax various muscle groups, one by one, until your entire body is relaxed.
• Meditation is a technique that requires you to focus your attention inward.  You concentrate on your breathing and on the present moment.  We practiced special-word, or mantra, meditation earlier.  There are other forms of meditation as well.
• Guided imagery involves creating a peaceful, pleasant picture or image of a place in your mind, where you can go to distract yourself from unpleasant or anxiety-producing situations.

<<MIND-BODY TECHNIQUE: RELAXATION BREATHING>>

Before we go on, let’s take a moment to breathe slowly and relax using a special technique.

You use it any time you feel you need it.

• Close your eyes. Take a breath in while counting to 1; then let the breath out while counting to 1. (Breathe in: 1.  Breathe out: 1.)
• Take a slightly deeper breath while counting to 2; then breathe out while counting to 2. 
  (Breathe in: 1, 2.  Breathe out: 1, 2.)
• Now breathe in to the count of 3; breathe out to the count of 3. 
  (Breathe in: 1, 2, 3. Breathe out: 1, 2, 3.)
• Now take a deeper breath in to the count of 4; breathe out to the count of 4.
  (Breathe in: 1, 2, 3, 4.  Breathe out: 1, 2, 3, 4.)
• Next take a breath in while counting to 5; let the breath out to the count of 5. 
  (Breathe in: 1, 2, 3, 4, 5.  Breathe out: 1, 2, 3, 4, 5.)
• Now work backward, starting with 5 counts, then 4, then 3, then 2, then 1:

–       Breathe in: 1, 2, 3, 4, 5.  Breathe out: 1, 2, 3, 4, 5.

–       Breathe in: 1, 2, 3, 4.  Breathe out: 1, 2, 3, 4.

–       Breathe in: 1, 2, 3.  Breathe out: 1, 2, 3.

–       Breathe in: 1, 2.  Breathe out: 1, 2.

–       Breathe in: 1.  Breathe out: 1.

• Sit quietly for a few minutes and let your breathing return to normal. 

MIND-BODY TECHNIQUE: SPECIAL-WORD MEDITATION>>

• Let’s pause for a moment to relax.  This is a relaxation method called 
  special-word meditation, or mantra meditation.
• First, choose your special word.  It should be a simple word or phrase 
  that has some relaxing or comforting meaning for you.  Examples include “peace,” “tranquil,” or “I am at peace.”
• Close your eyes.  Breathe in deeply.  Then let the breath out slowly.  
  Repeat this 2 more times.
• Start to repeat your special word silently to yourself.  Continue to breathe slowly.  Say the word to yourself as you breathe in.  Then say it as you 
  breathe out.
• If stray thoughts come into your mind, just turn your attention back to your special word and continue to repeat it to yourself as you breathe.
• When it is time to end the meditation, take a deep breath in and let it out slowly.  Breathe in and out one more time.  Then slowly open your eyes.

<<MIND-BODY TECHNIQUE: Guided Imagery>>

• We can take a moment to practice a guided-imagery exercise now.

–       Close your eyes.  Think about where you would like your peaceful place to be. Maybe it’s a beach at sunrise.  Maybe you’re floating on a lake or sitting on a blanket in the woods.  As you picture your special place, continue to breathe naturally.  Picture as much detail about your place as possible

q What do you see around you?

q What do you smell?

q What do you hear?  Do you hear the breeze?   The ocean?  
Are birds singing?  Pay attention to the sounds.

q How do you feel in this special place?  Remember that feeling.

–       Sit quietly in your place for a while

<<Facilitator:  Allow the group to sit quietly for a couple of minutes.  Then end the exercise.>>

–       When you are ready to leave, take a deep breath in and let it out slowly.  
Open your eyes

As always, you are your own best advocate. If you do not take care of yourself, who will?

Until next time,

Lina