Blood Disorders and all that gooey nonsense…

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Back in October, I had reached my last straw. See, for about 6 months I had been getting severe migraines on and off. Which was strange, considering I’d never had ‘em before. They were pretty debilitating, causing nausea and occasional blinding auras. Needless to say, it was getting hard to work and take care of the kiddos. Half of the time I was on the couch, fighting the need to upchuck my lunch.

SUN_HelpArt

The headaches were becoming so frequent, I went to the doctor (this time insisting it wasn’t sinus-related, as past sinus medications had proven fruitless). At first, she started prescribing migraine meds. But I really didn’t want meds; I really wanted to figure out the cause of this. After an Oscar-worthy pregnant pause, the doctor asked if I wouldn’t mind taking a blood test to rule out anemia or low iron. I agreed and promptly went to the lab to donate my red stuff.

To cut to the chase, after more tests (including an uncomfortable-but-not-as-bad-as-you’d-think bone marrow biopsy), it was concluded that I had a rare blood disease called “Essential Thrombocythemia.” Basically, that’s a fancy medical term for “my bone marrow produces so many platelets , they can clump up like bad cake mix.”

It was, of course, both a relief and a shock. A relief because the doctor prescribed baby aspirin to prevent blood clots, and this essentially (no pun intended) cured the migraines. A shock because at any time, my platelet count could increase and I’d have to go on special chemo-type meds. Also, this disease can mutate into one of three other more dire and unsavory related blood diseases.

But I choose to look on the bright side: it makes for some compelling cartoon material. Like a sneering, cosmic challenge: “Let’s see you turn THIS into something amusing!”

So I did.

Well, I hope so anyway. If anything, it was another cathartic event for the author.

And on that note, this series compels me to post a link to two foundations: the MPD Foundation and the MDS Foundation. E.T. is a called an “orphan disease” because it’s so rare and therefore kind of falls under the radar for funding/research. And the three other myelodysplastic (blood) disorders certainly deserve funding as well, considering one or two of them come with limited life expectancy.

So if you can and are willing to help out the future of one slightly freaked-out cartoonist, please do so by making a contribution. Or at least by reading the fascinating case studies (hmm, maybe that’s just me — chalk it up to personal significance).

In the meantime, enjoy the rest of the series. And really, I’m not that freaked out. Frankly, I’m too busy to worry.

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53 thoughts on “Blood Disorders and all that gooey nonsense…

  1. Hi Terri —
    With fingers crossed, I was hoping you weren’t talking first person in your strip the past few days. What a scary, surreal time for you. Glad you were able to figure out the cause and are on the path to relief. And that you were able to keep your sense of humor about it all! Take care of you….
    Lynn

  2. Thank you for bringing to light these wonderful orphans called MPDs. I have polycythemia vera, for over 20 years now. And, it is not always a fun disease. I enjoy your sense of humor, you will do well. A sense of humor is good with these diseases. Also, thank you for mentioning the MPD Foundation. They are doing wonderful things in funding research, my favorite charity.
    I wish you all the best on your road…You have a lot of company that I hope you meet along the way.
    Morgan

  3. Hi Terri,
    A friend in the US just sent me a copy of your cartoon about being dx with ET. She, I, and about 2000 others are members of an email-based support group, MPD-NET (more background available on the CMPD Education Foundation website, see address above). MPD-NET deals with day-to-day issues that affect those of you with ET, and the closely related disorders PV (Polycythemia vera) and MF/PMF (primary myelofibrosis). If you’re not already subscribed, we’d love to have you on board. Feel free to write to me, or sub via the website.

    Regards,
    Ian (in Canberra, Australia)

  4. Welcome to my world. I too have Essential Thrombocythemia – diagnosed in 2001. With meds it has been kept under control. I look at it like having any chronic disease. You take care of it and stay on top of things and life is just fine!! Best wishes to you in this new journey.

  5. Hey –

    I have ET too and I found out about it because of bad headaches- I went and got a blood test and my platelets were very high. ET can also cause the platelets of some people to not work right,and instead of having you blood too “thick” you can be prone to bleeding too long or too much. That’s the way I have it right now. Anyway, I love that you are putting this into comics and I really hope that it gets noticed!

    thanks:)
    Sara

  6. Love your cartoons and post about your newly acquired disease. I too have ET. I was diagnosed about 10 years ago and I am 46. Luckily, I have been healthy enough to raise my boys, 18 & 20. At times this disease takes over my life, like when my platelets become unmanagable, but sometimes I feel quite normal. It’s hard because people can’t see what is going on in our blood. Because we don’t always look as sick as we are, people assume we are just seeking attention. So I guess my best advise is TAKE CARE OF YOU! If you don’t do it for yourself do it so your family will have you longer. Thanks again for the funny cartoon! Kelley in Michigan

  7. Hi Terri,
    I appreciated your March 20th comic regarding E.T. I was diagnosed over 15yrs ago and have been taking the chemo med you referred to and my platelets are in control. Thank you so much for bringing this disease to ‘light’. I’m very optimistic for both of us. You’ve achieved public awareness of this blood disorder and I do hope that more funding will become available for future study. I wish you the best of health and cool superhuman powers.

    Sincerely,

    Barbara Roberson
    Barbara Robertson

  8. Hi Terri,

    I just found this blog on one of my MPD chat emails. I’ve never heard of your comic strip but we don’t get the paper so I’m not up to date on comic strips but I sure have heard of ET. It’s what my doc thought I had when a test showed my platelets at 1.6 million. After an “uncomfortable-but-not-as-bad-as-you’d-think bone marrow biopsy” 🙂 I was told that I have Primary Myelofibrosis, another one of the MPD’s.

    I’m sorry that you have been diagnosed with ET but it’s good that you’re only on a baby aspirin a day. I was a bit freaked out, also, especially after looking MF up on the net but now it is what it is. I guess I just wanted to let you know that you’re a part of a special group of people :-).

  9. Hi,

    How interesting that you chose to share your bone marrow biopsy and subsequent diagnosis of an “orphan” disease. Two years ago, my daughter, now 20, was diagnosed with aplastic anemia, also an orphan disease. Aplastic anemia is when the bone marrow does not produce enough blood cells, so all the blood counts are low. Our family empathizes with you and celebrates that you are carrying on! Plus, we love “Pajama Diaries”!

  10. Thank you, thank you! Your good cartoons, your blog – can bring Essential Thrombocythemia into public recognition, long needed. It’s an “orphan disease” and no one knows about it. Bless you – keep writing about it. And – you’ll be OK – aspirin, blood tests. Wanda McCollar – ET diagnosed 6 years ago. Doing fine.

  11. First of all there’s no such thing as bad cake mix. Cake is never bad. =) But seriously, I’m a huge fan of your work, God Bless, your a tough gal, if you ever need anything, you go it.

    Best Wishes to you and your family,
    Dan

  12. Wow! Reading this comic left me…well, speechless. I was diagnosed as JAK2 positive, polycythemia vera, essential thrombocythemia…hard to keep it under control with so many symptoms. Its a tough disorder to keep track of all the symptoms, and the humor you used is perfect! It can be scary, and I am still trying to deal with all of the symptoms…so Im moving from Cleveland to Hawaii, change of life, to live a better, less stressful one! Thank you for bringing this orphan disease to the public!
    Stay healthy,Laura DeRose, Euclid, OH

  13. Terri,
    I did a triple take when I read the comic referencing Essential Thrombocythemia! I was diagnosed over 10 years ago – but you rarely see it referenced anywhere. I’ve since progressed to Polycythemia Vera and I am on suppressive drugs to keep my counts in balance, but I do live an active and healthy life. I do hope you were given information on the MPD list serve….it’s run by great people and full of great information. Some of it will apply to you and some won’t.
    We have a few degrees of separation. I grew up on the West side of Cleveland (Avon Lake) and my cousin (Nancy O’Leary) works at American Greetings!
    Good Luck with the ET. It is manageable. Thanks for the Pajama Diaries….I really enjoy it!
    Eileen

  14. Terri, Welcome to the strange, wild world of MPD’s. I started with ET and have MF now. I was diagnosed with ET in 91 and MF in 93. Most don’t change so quickly but I was an overachiever with lots of megacarycytes. 🙂 Love your cartoons! Laugh and enjoy every minute of life it’s too important to waste on worry. I have two grown children, 15 international exchange kids and 8 grandkids. Plan to be around for a lot of years to meddle in their lives.

    Elaine
    Bellevue, Nebraska

  15. Love the strip! Thanks for the great work – and fun. This particular feature sure came at an appropro time for me – got the bone marrow biopsy the same day the strip started. So much of what you wrote was so true. A friend thought I had a secret life of writing a comic strip. haha —I’m saving the strips for the doctor and nurses. They’ll love it!!
    Peace and blessings to you,
    Roz

  16. Thanks, Dan! You’re right…cake: always good.
    I also love Rip Haywire. And I really appreciate your kind words.

    -Terri

  17. I’m sorry about your diagnosis, but thank you for the humour. It is awful to be unwell and after all the tests be told there is very little that can be done. It’s even worse when you realize how little the doctors know. I used to think orphan diseases were for other people, but one day you wake up and you are the person with a disease that isn’t a priority. The bottom line is we just have to live our lives and let life happen. Good luck and keep the comics coming.

  18. My husband donates platelets almost every two weeks. Platelets are used to help people undergoing chemo, or awaiting certain types of surgery. It would be amazing if you turned this gift of extra platelets into an amazing gift to others who cannot make their own due to their medical conditions! Talk about turning a ‘negative’ into a massive positive!

    • Hi Lori
      Donating platelets not so easy in our situation. My husband had cancer and had platelet transfusions so when I was diagnosed with ET I asked if they could use the excess platelets I had and was told No, not possible. I don’t know if it is due to the meds we have to take. To me it seemed a good idea too 😃

  19. Attagirl, Terri! I think it’s great that you’re using the situation for fodder–the best cartooning is always the heartfelt material. I look forward to reading the storyline, and hopefully seeing you in Jersey City soon!

    Tom

  20. Hi Terri, I’m am also a big fan of your work. I read it every day on a religous basis. 🙂 You will be in my prayers. I hope the sunshine of life and god shine down upon you to help you through this disease.
    God bless
    – Andrew

  21. Thanks, Terri, for a strip that really hit home. I run an online support group for CFS patients, many of whom will relate to the conclusion of today’s strip that the reason we got this disease is we’re control freaks.

    It’s always been my theory that God puts such obstacles in life in order to teach us much-needed lessons. For a lot of my Type A fellow patients, lessons such as patience, slow down and smell the roses, or, as today’s strip points out, some things even a control freak can’t control.

    I’m a lot more mellow than I was before I got sick. The first medication that actually helped had the side effect that if I stood up, I passed out. I spent most of that year in bed, venturing no further than the bathroom 4.5 feet away. Talk about developing patience! Literally everything had to wait for months till I was done taking that medication; I even had trouble concentrating enough to knit or watch a TV show, much less anything more mentally challenging like work.

    Good luck!

  22. Kudos to you. Just goes to prove the good story telling is the essence of any medium — novel or comic strip.

    I hope the baby asprins do the trick for a long, long time.

    – Dominic

  23. First, let me begin by saying that I do not read cartoons; however, the mother of a friend of mine showed this to me. She was most upset, because she has a daughter with either the same or a related disease, and she thought you were poking fun at it. I went to this website and read her this article, and she was feeling much better about it, as was I. We hope yours in under control – unfortunately hers is not. She has had it for a number of years. We hope that you will end the series with some of what you have printed at the end of this article. Good luck to you, and I might just read your comic to see how you are doing.

  24. I have a blood clotting disorder – Factor V Leiden Mutation. Your strips have captured the feeling I had when I found out. I now revel in the fact that having a mutation makes me a mutant! And, my special “power” is that I can clot quickly.

    Thanks for helping to recognize blood clotting disorders. March is National DVT (deep vein thrombosis) Awareness Month.

    Best wishes,
    Rhonda

  25. I have been diagnosed with cancer reacently and have seen your current series. It really resonates with the feelings I have, especially today’s (March 24th). I am too busy and have to much to do; finding a job, taking care of my parents, taking care of my girls and working on my art for this to be happening. While I am not happy to find out the content of the strip is real, thank you for the perspective! God Bless you!
    M

  26. Glad to read you’re doing better. I’ve been a fan for a while, and this storyline looked more first person than usual. Keep up the good work and best wishes.

  27. Love your column. I also posted a note on the other site. But it was a message that I wanted you to have. I have ET and was diagnosed 4 years ago. I chose NOT to take Hydrea (which was prescribed at that time). If I had I would probably be dead. Most people I have found on the drug were dead within 2 years. I see a chiropractor (my brother) who found I had a severe virus in my spleen. Well, foroty supplements a day for four months and it has not returned. Next, my path took me to an alternative medical doctor in Sebastapol, CA. His name is Dr. Isaac Eliaz at the Amitabha Medical Clinic. I have been there for over four years. I go for a week of treatments and then return again in 6 months. I have not down to once a year and doing well. My platelets have dropped from 895 to 663 in the last 6 months. What we have discovered together (Dr. Eliaz and myself0 is that the cause for me is severs stress and the ever present first child syndrome of “caretake” of the world. So, After my husband quit drinking (almost 2 years), life is very calm and happy. I find that meditation and yoga, plus a host of supplements that keep the metals and such flushed thru my system and lots of things to keep my immune system operating a peak performance, i feel great. I also have some food allergies (mainly wheat) and have learned to make everything using different ingredients. We always garden here in MN and So with a love of both cooking and gardening, I stay very healthy. But keeping a positive and happy life is the most important thing, next is stress, and if mannaged I believe that the good platelets will again outnumber the mutated one.

    Hope to hear from you – blessings and much good health in your future. Sincerely Bonnie Olsen

  28. I enjoyed your comic strips about E.T.so much. I was diagnosed with polycythemia vera ten years ago at the age of 55. P.V. is a myeloproliferative disease of the bone marrow. I also had a bone marrow biopsy [not as awful as I anticipated] and I am treated with regular phlebotomies. I really had to laugh at the last in the series,when Jill came home from her run and complained about her asthma. I am a walker and always have to use my inhaler before my walks for my adult onset asthma. Maybe there is a connection between bone marrow problems and asthma.

    Martha White

  29. i have a friend at work who is very intrested in your story about your blood disorder. she said she is going through the same thing and would like to talk to you. she’s an older woman and dosen’t have a computer. she would like to know how she could reach you by mail.

  30. I love this whole stream of strips. I cut out most of them and I am giving them to my hemotologist and my brother. I have ET and he has polysthemia. Don’t worry, the chemo drug isn’t so bad (I have aspirin sensitive asthma and can’t take asperin). My brother needs interferon, which is pretty bad. Thanks for the references and for making jokes out of this. I particulary liked the asthma strip.

    Thanks,

    Marion

  31. I too live with ET diagnosed in 2006. ET friends of mine sent me the link for you comic strip and I read it. I wondered how you hit so many of the facts so perfectly, so I googled you and found you too live with the disease. Thank you for making people aware of this disease, OUR DISEASE.Thank you for making me laugh about it.

  32. I enjoyed your comic strips about E.T. so much. I was diagnosed with a similar disease, polycythemia vera, ten years ago at the age of 55. Like you, I didn’t think that the bone marrow biopsy was as bad as I had anticipated. I’m treated with regular phlebotomies. I really had to laugh at the end when Jill had trouble with her asthma after going for a run. I’m a walker and always have to have my inhaler handy. Could there be a connection between bone marrow problems and asthma?

    Martha White

  33. Truly unbelievable. My mom, Fern, wanted me to write and let you know that she too was recently diagnosed with ET. She loves your strip and was thrilled to learn that she was not alone.
    Stay healthy

  34. Hi Dan, for some reason my reply never got published. Trying again months later. Just wanted to say thanks, I concur about cake mix, and I’m also a fan of your work! Thanks so much.

  35. Guys, I had no idea these emails were out there. Almost 6 months later, my husband found ’em (technical error, oy!) and we finally posted them. I am soooo sorry it’s taken this long. Thank you for all the wonderful sentiments and invitations.

    Terri

  36. Terri, I have to say I had no idea YOU were diagnosed with ET. I applaud your honesty and your bringing it out and in front of us. I am thrilled you’re doing well. Wishing you all the best!

  37. Could we find the whole series on line? If not I’ll just have to go to the library and find the ones I am missing. I also realized that I haven’t had as many headaches as I did before diagnosis.

    Thanks again,

    Marion

  38. Hi Marion,

    Not sure if you can see the series online unless you subscribe to DailyInk.com. I’ll be publishing the series in my upcoming book, which I’m working on now. When the book comes out, I’ll post a notice on the site.

  39. I seemed to be aware of this previously, but nevertheless there was clearly several beneficial bits that completed the image to me, thanks!

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  41. Pingback: So what’s up with those platelets? (get it?) | The Pajama Diaries

  42. What a shock when I read the name, ‘Essential Thrombocytosis’, in the ‘funny’ paper. Mom had it and the reference to the hi platelet count really got my attention (I was unaware of your situation before July 7, 2015). PLEASE BE SURE TO DRINK PLENTY OF WATER!!! As in lots and lots. Ya gotta flush all those heavy-duty meds that lower platelet counts out of your body quickly. Not only do they make you feel pretty awful when they just sit inside you–and sit and sit– but they damage the kidneys which is what finally got Mom (after about 27 years–she passed at age 92). She never liked to drink water and she considered gagging down 4 or 5 little 3- or 4-oz juice glasses of water a day all she could manage. She DID feel a lot better when she drank lots of water, but she just wouldn’t keep it up. I wish you all the best. Just FLUSH THOSE MEDS and stay positive!

  43. I have been a big fan of yours for years. Then, we stopped getting our local paper and have missed the comics. Surprised to see that a rare disorder is being talked about,not only in a comic strip but, one of my favorite ones. I was first diagnosed with ET a year ago and a few months later told it is PV instead. Thank you for bringing awareness. 😉

  44. I first noticed your reference to excessive platelets about six months ago in your cartoon. I, too, was diagnosed with Essential Thrombocythemia and have been on hydroxyurea (chemo) for five years. I am now 75 years old and seem to be able to manage the disease with the small dose aspirin and chemo. Really chuckled when you referenced losing your hair. It has taken five years but the part in my hair is getting wider each month and my pink scalp keeps sneaking out between the hair follicles. Ugh! It does seem rather ridiculous to complain about the loss of hair (and I whine about it all the time!) when I have very few other uncomfortable side effects–which I have mostly identified as being a result of taking the chemo. I am going to try to get in touch with some of the above groups because it would help a lot to have someone else to talk with and share ideas. I so hope you are doing well and are coping. In a current Pajama Diaries scene you state “What I need is to slap some bullseyes on those little buggers.” This is SO true since the hydroxyurea therapy is not platelet specific in its attack on the blood system. What we need to pray for is a drug that is platelet specific and then for someone to come up with a diagnosis of why it occurs and how to cure it. Terri, I now look forward to reading the comics just to see your new input. Thank you.

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