Who needs hair…and the ongoing “ET” saga

Share

As you’ve probably guessed, the late March storyline was deeply personal. Many of you know I was diagnosed with a blood disorder, Essential Thrombocytosis, years ago. Well, it’s a relatively benign but progressive disease, and for the past few years, it’s progressed a lot.

In general terms, my bone marrow overproduces platelets. This can cause bleeding and clotting issues if not controlled. For a long time, I only needed a baby aspirin to thin my blood and a vitamin regimen to alleviate the side effect of migraines. That worked well until about two years ago when my overachieving platelets shot up into the millions.

Time to call in the big guns. I went on a medication that helps lower the platelet count. It helped…for a while. And then my count started going up again. So my doctor increased the dosage.

About 3-4 months later, this happened:

My dermatologist and hairdresser confirmed it — I still had plenty of hair on top of my head, but it was thinning from the bottom. It was upsetting, to say the least. And I felt — to be blunt — ugly and unfeminine. Bless his heart, my husband disagreed.

Around September last year, I finally bit the bullet and got a new haircut. It helped. I still feel more, well, me, with long hair, but this worked wonders. Even my kids liked it.

As for my platelets, the medication stopped working and now I’m on a new one that will hopefully work better in the long run. It’s a wait-and-see process. And it may make my hair fall out again. 

But even I’m starting to realize that there are more important things. Like staying alive. That’s kinda big.

On a brighter note, I leave you with one of the few selfies I’ve ever taken. I snapped this right after I got my haircut and dried off all my tears. It’s actually one of my favorite photos.

Probably because I look pretty alive.

Share

58 thoughts on “Who needs hair…and the ongoing “ET” saga

  1. Love your selfie. You’re right, the most important thing is the ‘staying alive’ part and I’m so glad you’re focused on that. I’m a huge fan of your work and wish you the very best with hopes that the new medication works well for you.

  2. Thank you for sharing your story, Terri ! The ‘new’ (I’m guessing you’ve had it for a while now) haircut looks great!
    Here’s hoping the latest med is doing what it needs to! I’m coming up on 2 years of taking hydroxyurea, and so far so good. Thanks for the reminder not to get complacent & assume it’s going to work forever!!

  3. Hi Terri. A little while after I had my daughter, my hair started to fall out. (Not the same I know). I reached the point where I decided to get a fairly short haircut and have kept it on the shorter side ever since. Your haircut and you look great, and your trip looked fabulous! Sending good vibes for you from Boston.

  4. Hi Teri,

    You look fabulous no matter what. Great photo and by the way you will be darling and full of humor, grace and personality no matter what. Sending loads of life from all of us.

  5. I’m a big fan of yours, Terri. I feel like I know you through your work, and as cliche as this sounds, your beauty comes from within. But after seeing your selfie I think it’s safe to say you’d still be a beautiful man-killer on the outside even if you were totally bald.

  6. With or without hair, you will always be a beautiful and gifted woman! Lots of love, laughter and respect from Toronto…

  7. I’m dealing with different but similar issues. I’ve always loved the pajama diaries and constantly share links. This recent turn had me crying with you. I haven’t cut my hair yet for fear it will look worse. But your strips made communicating what i was feeling to my husband easier. BH my issues are hopefully in the past but the meds side effects… i dont need to explain. Thank you for opening your life to us, and sharing.

    • Wow, thanks for sharing. I’m happy I could help in some small way (sorry about the crying). Continued good health!

  8. Terri, your are a beautiful young lady. Yes you are beautiful on the outside, but what is even more important is that you are super beautiful on the inside. Even more important is that you are a wonderful, wife, mother and friend.
    God bless you and your beautiful family.

  9. Thank you so much for sharing your story. I have been reading your strip for a long, long time. I was diagnosed with cancer a year and a half ago. I have been done with the surgery, chemo, and radiation for almost a year, but there is a medication I need to take every day. It, too, has some very annoying side effects. But I am willing to put up with a lot to stay healthy. Best wishes to you. And I love your haircut.

  10. ET going on 16 years since diagnosis. I recently was introduced to your pajama diaries comic and love the way you keep things in perspective. You are an inspiration to a lot of people dealing with health issues.

  11. I had the same issue. Messy drains caused by prescription meds. Yuk. My doctor recommended BIOTIN. OTC. Simple. Cheap. Easy. She said it would take about 2 weeks to work. In three weeks, problem solved.
    I was hoping it would re-grow my eyelashes. But that’s an aging thing. No long lush young eyelashes. But no clogged drains either. Yea!

  12. BTQW, when I was 30something, I had my waist length hair cut into an extremely short pixy. My husband loved it. He said all that hair “got in the way” during important times.

  13. Darling haircut, dear darling Terri! Thank you for sharing your love and laughter! We are blessed, our ET can be treated with amazing meds! God Bless you and your family!!!

  14. Hi Terri. Keep dealing with meds and side effects I take meds for breast cancer I dealt with 3 years ago. I lost my hair. My hairdresser told me to take biotin daily. It takes weeks to see change but it works. I send your wonderful Pajama Diaries to my daughter every day. She has a teenage daughter and you have captured the teenage life perfectly. My daughter says that reading your comic strip daily makes her day. I send you a hug and know that I will think of you on my daily walking meditation. amy lerner

    • Thank you, Amy! Happy to hear that you beat breast cancer. And thank you for reading PD and sending it to your daughter (you can have her call the local newspaper editor and ask that they add it to their lineup).
      Your kind words are very appreciated. Stay healthy!

  15. You are beautiful! I love your hair style! Wow, surprised to hear about what you’re dealing with. You are an inspiration! I love your work! Best wishes always, claire

  16. Wow! you are so pretty. I’n a hairdresser, so I should know. Very best of luck, hang in there and fight.

  17. Hi Terri: I am so sorry to read that your treatment is not effectively managing your platelet count. I was diagnosed with ET five years ago and have been on a small dose aspirin and hydroxyurea treatment since then. Right now the only side effects I am experiencing seem to be associated with the chemo although I am 75 years old so. . . Premature balding is the most noticeable and boy do I whine a lot about that. (I am definitely heading to the store to buy Biotin today) In a recent strip you state “What I need is to slap some bullseyes on those little buggers”. This is so true. Hydroxyurea is not platelet specific and impacts all of the blood. We need someone to come up with a treatment that is platelet specific. I suspect you have already studied a company in California that is supposed to enter a Phase III clinical trial studying a controlled release of a medicine specifically designed to address ET. We just need to hang in there and keep the faith that some day, hopefully sooner rather than later, someone comes up with a cure. Also, keep those strips coming. Group therapy is a marvelous tool and keeps us focusing on what is important Thank you–and you do look wonderful!!

    • Thank you for the wonderful message. I’m doing well! I wrote this week’s strips 6 months ago — these days I’m on Pegasys, which seems to be helping. Continued good health to you!

  18. Terri, I’m glad to hear you’re on Pegasys. I’ve been living with ET for over 20 years now. I’m wondering if you know about http://www.MPN-NET. This is an educational/support group like no other. It has about 3000 members world wide. Every two years we meet with the leading experts in the MPNs at Mayo Scottsdale, listening to the latest in research and treatment, asking questions and getting the best advice out there from the people who know, who come from the major research centers. You can access the videos of the last conference, which was in February, by following the link on the website. There is also a link to the wonderful support group, a list serve run by volunteers, all of whom have an MPN. It is the reason I’m still alive. Recently my ET became more aggressive, but thanks to a conversation with the right experts at the conference, I have changed treatments that will hopefully keep this disease under control. And thankfully I have a knowledgeable local hematologist who approves the change. You are not alone in your journey with ET! I encourage you to check out the website & lurk for awhile on the listserve. When you have questions, there are people who have ‘been there done that’ who understand!
    Betty in Fairbanks, Alaska

    • Thanks, Betty! For some reason, the link isn’t working. Would you mind posting it again? And I’m glad to hear you’re doing well. I do belong to a few groups, mainly on Facebook. It helps greatly. Thanks for the info and continued good health!

Leave a Reply

Your email address will not be published. Required fields are marked *