Connecting the Dots

Living with an MPN – Connecting the dots….  

Cheryl Petruk.

When you don’t look sick, how do people know that you are sick?  First of all, what is the definition of sick? Well, the Merriam Webster dictionary says that the word sick is defined as: 1. affected with disease or ill-health of, relating to, or intended for use in sickness a sick ward affected with nausea,  inclined to vomit or being in the act of vomiting sick to one’s stomach was sick in the car. 2: mentally or emotionally unsound or disordered.

But for people who have a Myleoproliferative neoplasm, a rare blood cancer, some people travelling this journey don’t fit this dictionary meaning of sick.

They don’t appear to be sick, by their outward appearance. They may lose a fair bit of weight, as they don’t eat as much as others, but so do lots of other people…especially if you are on a diet or watching what you eat.  You are tired from your anemia, but who else isn’t tired from a hectic schedule that you lead and who doesn’t try to get a quick nap in….. For most people with an MPN such as;  PV, ET or MF, they don’t look sick.  But outward appearances really don’t tell the whole truth.

As a care partner to someone with an MPN, what I notice is the ongoing fatigue, the change in appetite, the deep purple bruising, the nightly leg cramps and night sweats. The change in their overall   demeanor, their lack of concentration and their overall stamina.   While some of these symptoms are very noticeable, and really any person sick or not, could have any or all  these symptoms,   it really isn’t until a person is diagnosed with an MPN that the light bulb goes on and you now start connecting the dots.  It’s like when you were a kid, and you had one of those connect the dots coloring books……for some of you, you knew right away what the picture was going to be, and for others, it takes a while and a whole lotta dots for you to see that entire big picture.  Any of these symptoms individually doesn’t make us take notice. However, it isn’t until the diagnosis of a Myleoproliferative Neoplasm is made that we start seeing the picture come to light by connecting those dots…..and for the most part the person doesn’t really  look sick or even sick enough to have a rare blood cancer.

You try to justify, why you didn’t recognize the symptoms as they appeared? Why didn’t you see the dots making that picture.  Dot 1 to 2, to 3 and to 4 and so on…. But you rationalize in your own mind, well; who isn’t tired…we lead stressful lives.  Who doesn’t get a few bruises here and there…especially if you work and play hard…aren’t bruises normal?  You tell yourself they are.  Leg cramps, although they are so debilitating, you think OK, they need to bump up some potassium in their diet, and tell them to eat another banana, and night sweats, for women, you say,,,,I hate menopause.  For a man, you joke and tell him maybe men have a change in life as well???  If is not until you are sitting in the doctor’s office, learning of the rare blood cancer that the person in your life has or maybe even yourself,  that you start to see that picture of dots start coming to life.  You think back and say, how could I have missed all these symptoms?  Why didn’t I see this happening? Why didn’t those dots show me that picture sooner?

Having a blood cancer is not the same as having a broken arm, or a cut that needs stitches.  What’s happening is not visible, not noticeable, until those dots start getting connected through a diagnosis.

As a care partner to someone who has an MPN, first diagnosed with ET, back in the day when they told us it was a “blood disorder”, and said we really don’t know much about it, so we will just watch and wait.  13 years later, when these symptoms started popping up…just like the dots on the coloring book page. We only had a few dots connected way back then….and in 2010 at diagnosis, the hematologist that we were referred told us that we could connect a few more dots….and the picture started to appear.  When the confirmation came to the actual diagnosis of an MPN…all those dots finally made a picture!

As a Care partner, I asked myself often, how did I miss all this?  Why didn’t I see the tiredness, the bruising, the leg cramps and all the other things?  Wasn’t it my job to be watchful for my partner? Should I have not noticed these changes and insisted on a doctor’s visit? In the back of my mind, I often thought about it and,  well if I had only noticed some of these symptoms sooner, then maybe my husband wouldn’t have gotten this blood cancer? Maybe if I would have paid more attention to the symptoms, things would be different today?  I should have noticed the dots and the picture sooner.  And then to find out there are other symptoms that come up….that you have never heard of before….so who started adding dots to the middle of this picture?  This changes my perspective of what the picture is turning out like!

There is a lot of guilt for the spouses and care partners of people who have the diagnosis of an MPN.  Not being able to connect those dots sooner, not seeing the picture clearer and sooner rather than later, and in some cases too late. And while connecting those dots worrying about where the next dot will be, and what will that picture turn out to be?

What I have come to realize is that sometimes that there are too many dots for us to see the whole picture come together quickly.  Even doctors sometimes struggle with the complexity of this blood cancer and have difficulty seeing the picture appear from all the dots and struggle with that initial diagnosis.

As I move forward with my spouse in this journey of connecting the dots.  I have learned that the picture that will come to light in the end is the picture that we make it by connecting our own dots.  Yes, each person with an MPN whether it is PV, ET or MF, has the same dots that you will all connect, as in similar symptoms, but each of our pictures will all be different, and different in how we react to those dots and how we connect those dots.  Will those connections be straight hard lines? Will they be squiggly lines? Will they be dashed and dotted lines that make the picture come to life?  I don’t know, what your picture will look like, and I don’t know what our picture will eventually look like, what I do know is that I choose to take one dot at a time, or for that matter a small number of dots at a time, and focus on that, rather than trying to figure out what the entire picture will look like in the end.  I know for most of us, who are big picture thinkers…before we can do and put something into action, we need to see that big picture, or envision that big picture!  But what I have come to realize that in this journey, it is all about connecting the dots one dot at a time, and not worrying about the big picture, or what that picture will end up being.

3 Comments

  1. Jeanette McNamara says:

    Very well put, reading the dots is a slow process, well written

    Like

  2. Florence Margan says:

    It installs a map in your mind of symptoms a carer could look for in traveling the journey ahead. Great!

    Like

  3. Wilhlemina Hoftyzer says:

    This is a great article, somehow helping us alleviate some of the guilt we may feel at having missed some of the signs and symptoms of this disease. I remember that for about 2 years prior to George being diagnosed not only with primary myelofibrosis, but also with chronic lymphocytic leukemia, his main symptom was profuse bleeding whenever he cut himself. He loves woodworking so there are often cuts, knicks and sometimes some more serious gashes associated with this hobby. Because he was so asymptomatic, we never really gave this too much thought, because he healed very well from these cuts. Since I was a nurse, I would put steri strips on them, wrap up the cut, and life would go on. Looking back, perhaps I should have clued in that something was wrong…….but would it have changed the outcome? The fact is that because of the 2 competeing neoplasms, the treatment is very complicated, and we have decided to let nature take its course until there are more viable options.

    Like

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