Tuesday, August 27, 2013

Expert Opinions, or My New Treatment Plan.

Slacker-town, USA: population, me. Sorry for the long wait between postings. Things have been... just, crazy. First with the Mayo number, then trying to figure out the best way to deal with it.... its just been wild lately. So, I know I can't make up for making you wait so long, but maybe giving you all the dirty deets will help.

After we found out the Mayo number was 10, a lot of things happened. I went for chemo last Thursday, and I was even more neutropenic than I had been the past round, when I posted about it. In case you don't remember, or aren't into re-reading every blog I've ever written, (I mean, I know, I'm brilliant, but that might be kinda boring...) that ANC (remember, that stands for allover neutrophil count, or the amount of white blood cells I have to fight off disease,) was 560. This time, it was 240. Pretty scary stuff. My hemoglobin was low too, around 9. They couldn't give me chemo again, and delayed it until this past Monday. They scheduled another 3 days of neupogen and told me when and if I get more chemo, I will get neupogen every time, since my body has just not been able to recover. The best part? I'm going back to work for at least two weeks, so I get to self administer the neupogen. I'm not actually going to do that, though. My mother in law and Jim are going to give the shots. They also scheduled me for a blood transfusion the following day, because of the low hemoglobin.

I've never had a transfusion before, and I'm not sure if many of my readers have, but it is quite the experience. First thing they do is give you this bracelet for "type and cross." Like three nurses have to sign off on it, and its all very serious. When they gave me the blood, both Jim and Jack were there. At the infusion center, most patients sit in recliners in groups of four in an open air suite, but they have two private rooms with beds, so they put me in the princess suite. Kim was my nurse, and she is really comforting and amazing and knows me pretty well. Since the whole thing grossed me out so bad, she covered the blood with paper so I couldn't even see the bag. They gave me a shit ton of Benadryl in my IV, which, along with the Ativan I took, made me like "wheeeeeeeee," then, "zzzzzzzz." I actually went home and slept like 6 more hours, too. It was the first time since before I had my son that I just went to bed. I just came home and was like, byeeeee Jim, see ya, I'm out. It was lovely. I didn't feel better right away, but I have noticed in the days following that I am less short of breath and have a bit more energy. I'm experiencing some pretty intense physical exhaustion, though. Every round kicks my ass a little bit more.

Speaking of rounds.....

We met with Dr. Sehbai yesterday to discuss the therapy I will need in light of this Mayo number. When we spoke on Thursday, Dr. Sehbai suggested he reach out via email to some of the world's experts in treating GTD (gestational trophoblastic disease, or the class of disease that my cancer belongs to.) So, we got the information from them and the consensus is 3 more rounds.


I thought I was done, so it is frustrating. On top of that, it seems that this setback has caused me to finally start to feel some of the things I was eventually going to have to- sadness, anger, and the "why me," type thinking. Its healthy, and normal, but hard. I have been feeling totally discouraged. It doesn't hurt that when I "was cured," that a lot of my readers/supporters kind of disappeared. My readership has slowed down, and even my Facebook support seems to have taken a nosedive. I feel like I was getting a lot of support from blogging, and feedback from it, and now that this is gone, I am feeling a bit lost. I gotta say, it wasn't my idea to blog about this. I've been feeling discouraged because of it, and when I mentioned it to Clare, the therapist I am seeing, she said that it may be beneficial for me to write about it and let people know. I know my readers are the best people ever, and they wouldn't make me feel bad if they knew. And honesty is the best policy. And stuff. Still, I feel a bit vulnerable, and hesitant to post like this and ask for help. You see, I'm not the best at that. So be gentle on me. I promise not to wait between posting next time.


  1. Hi there - Thank you for posting an update...I've been worried. You don't know me - I'm a friend of Lisa Isenberg's on FB and I've been following your story all along. I've been pulling for you, watching for "your number", crying as I read some of your posts, and felt so joyful when you thought you had finished your treatments. I've saved you in my favorites. I've checked for updates every day. That's all about me, though. What I should have done is posted a comment to let you know that I was out here, thinking about you and your family, praying for your recovery, and letting you know you DO have supporters out here that you're not even aware of....and will continue to follow your journey. I am sure there are others too. I don't know you, but I feel through your posts that I know a lot about the type of person you are - determined, optimistic, grateful to name a few. Also - I love your use of the word shit ton....it's a term I picked up a couple of months ago and have used it related to work and the impossibilities of meeting deadlines with the "shit ton" of work that needs to get done. I hear that so-many ST's equal a FT. You can google it. That's all. I'll be here reading, thinking and continuing to send healing thoughts your way. Barb.

  2. Been quietly pulling for you since Kari first posted about you. I have to admit that I felt a little stalkerish and thought maybe it would be weird to post since you didn't know me! I too have celebrated your joys and cried tears for you. You are an incredibly strong woman. I pray that one day all of this will be a blip on your radar. So, guess I just wanted you to know that you are not alone. I'm here pulling for you and will continue to do so! I'm inspired by your strength. Here's to kicking cancer's ass!

  3. I am yet another one of your "stalkers" (not in a creepy way, I promise). I first heard your story through the WTE app and I wanted to say that I am so sorry you are going through this. No words can make it go away. But my prayers are with you and your family. Keep strong. You can beat this! You have a whole lot of people cheering you on, even if they often cheer silently :)

  4. Yes!! I agree with the previous posters. Although, as you've noticed, there is nothing silent about me. These posters have expressed so well what I feel. I talk about you to my husband and to my friends and am very, very much looking forward to the day I can tell them that treatment has ended and you are steamrolling your way through remission. And I cannot imagine that even the most super of all super women (aka you) would not feel completely discouraged, frustrated, angry, and sad - and allowing yourself to feel and express those feelings is part of what makes you superwoman in the first place. We love you, Kat. Always know that. And let us continue to follow your journey - keep posting. You have more readers than you can imagine.

  5. This comment has been removed by the author.

  6. Kat!

    I am also here via another one of your friends (Olivia). I have been reading your blog for most of the summer and you are such an inspiration you don't even know. Your honesty is intriguing but your spirit is what I admire most about you. You have more spirit than most anyone I have ever met and I truly find strength in your journey even if I can only relate a little but really have no idea what you are going through. I continue to check for your updates almost every day and look forward to you beating the shit out of cancer. For real.

    Much love ( if even from a stranger )

  7. Hi Kat,

    I'm one of the ladies from the WTE board (zumbabebe). We miss you there, by the way! I have to give a shout out to excitedmommy for keeping us informed on your progress. She's pretty awesome at that.

    You were honest so I'll be honest: this post made me cry. I think I'm exhausted as a working mommy with my four and a half month old who is teething and has an ear infection. Shit. I don't know exhaustion like you do! All along I've been impressed by your strength as you've had to experience motherhood and cancer at the same time. You inspire me to be better, and not the whiny baby I tend to be when even a little sick.

    If I'm also being honest, I'll tell you that I lost a good friend to breast cancer in 2011. I think about her a lot. And I think about you a lot. She was like you in a way. She didn't want anyone fussing over her. When we first heard the news, another friend and I went immediately over to her house and cleaned it. That is not what she wanted. She didn't want others taking care of her kids or cleaning her house, no matter how sick she got. I miss her, a lot.

    So I think about Katy and I think about you and I want you to know that while you are dealing with these hard feelings and may not have the strength to be your usual positive self, I will be positive for you. I'm pulling for you and your sweet family and your sweet, sweet baby. You are not forgotten, you are thought of by many!

  8. I was one of your "followers" on the April 2013 WTE forum and heard you had to delete the APP because you ran out of room on your phone. Just wanted to drop a note to let you know I'm still rooting for you and that you are still being thought of. I'm so sorry you've been dealt this card. You are an amazingly strong woman and an inspiration to all. Looking forward to your updates. Sending you lots of prayers and love. Stay stong momma!


  9. Hi Kat,
    I am on the WTE app as well. Just wanted to drop a quick note saying that I think of you and Jack often and Nina and I are pulling for you. I will not complain about her 4 month sleep regression anymore, thank you for putting things in perspective for me. I cannot imagine going through what you are going through and I must say, you have so much more class and eloquence than I could ever muster in your situation. I would be a big ball of tears and feeling sorry for myself. I admire your courage and drive to do what you need to do so much. Keep trucking. I know your story will have a happy ending and until then everyone in April 2013 is thinking of you. Much love to you and yours.

  10. This comment has been removed by the author.

    1. Okay, I'm officially worried again and would love an update as to how you're holding up emotionally. I know you feel a lot less animated than before the awful setbacks, and that is completely understandable, but so many of us miss your daily blogs. They were so honest and well written. Come baaaack! We miss you and worry about you when we don't hear from you.

    2. I have finally updated! Sorry to worry you, I have been busy as I returned to work Suday and spending almost every free minute sleeping.

    3. Chemo, infant, AND WORKING?!?! You are officially my idol. And so glad you're back to blogging!

  11. Just wanted to let you know I am here and rooting you on! I know this is so hard but you are really doing a fabulous job!