Monday, August 19, 2013

How is This Even Possible....

Hey, kittens! How's tricks? We have had a busy week here. Christa, my sister in law, was here, plus we  (and when I say we I mean my family and friends,) participated in the run or dye event in Dover this Saturday.

I also got some more discouraging news on Friday. It turns out, once my hCg got to <5 according to my home lab, it needed to be sent out to the Mayo Clinic, the closest place that is able to measure the quantitative, or quant for short, value. When we asked to have the quant run, we were assuming the value would come back 4, 3, 2, etc. Since I was supposed to finish my last round for hitting undetectable this coming Thursday, I guess we just assumed everything was fine. But when we asked for the bloodwork, they said the doctor needed to review it first. Dr. Sehbai was out of town at a conference. So, they sent an email asking him to release the results. The following day, another oncologist released them.


We were absolutely floored. The first reaction, of course, is, what the hell does this mean? Is it a lab error? Typo? Am I dreaming? Because this feels a bit like a nightmare! So, we called Dr. Sehbai, the kindest, most dedicated doctor there is, and he tells me not to freak out (not in so many words, but you get the idea.) So, the next step is to determine if there was a rise in hCg. I also contacted Dr. Cadungog, who explained that if there was a rise, this would mean I am chemo resistant, and need a different protocol, EMA/EP.

The following day, they tested my hCg and sent to the lab I have been using all along. It determined that my hCg is still <5. So, no rise. But, ten is ten is ten. If the Mayo Clinic, which has apparently more sensitive equipment, says ten, I'm not cured.

I'm not cured?


Again, when I posted my last blog, I was filled with anger and frustration. I thought that this was the worst it could get, a delay in my last round. As it turns out, I now am more than likely going to be needing more chemo. And the kicker? I have run out of short term disability days at work. So, for my next round, I will have to be actively working while getting chemo. Fortunately, after working 14 consecutive days, I can open up another short term claim and go out of work for another 6 months. I have no idea how I am going to get through those two weeks, though. I am exhausted as is.

It was really important to update my readers, but I am just not sure at this point what is happening or where we are going with this. I am going to try to get a blood draw ordered and sent back to Mayo sometime before the day I am due to see Dr. S and have chemo again (this coming Thursday.) I wish I didn't have to do any of this, because my charming cousin Tammy invited me to visit her and her son, James, this week. I am so ready to get in the car and just disappear for awhile..... Run away....

I will update as soon as we know more.



  1. Ugh!!! I can't imagine how freakin disappointed and, well, shocked, you must feel. HANG IN THERE!!! It may take longer, but you WILL conquer this parasitic beast. If my mother did it with stage three throat cancer and the absolute worst attitude on the face of this earth (she's quite a bit like how you've described your mother, if that helps in giving you an idea), you can definitely do it!!! Cry, scream, yell, punch your pillow - do what you need to do to get through this. I admire you very much, Kat, and am rooting for you. Virtual hugs going your way.

  2. Hey, Kat, I noticed you haven't posted since Monday so I wanted to check up on you. I cannot imagine what this news has done to you and I can imagine you might be in a dark place, but I'm thinking about you and wishing you continued strength and love. Also, one of the women on What to Expect posted about you and many of the women responded and send their love and good wishes. I thought you might want to know.

    1. Hey Girl!
      First off, thanks for the support! My blog readership has downshifted a bit, and I have been feeling down, so knowing there is love out there really means a lot to me, more than words can express. I haven*t posted mainly because we don*t have a real update yet-- I was unable to get chemo Thursday, which technically would have been my last day of chemo if we hadn*t gotten the big 10 from Mayo. I was severely neutropenic (240-- it was 560 the week before when we delayed chemo, so pretty bad, pretty risky,) so they did neuopogen thursday, friday and today. I will have chemo Monday. Sehbai has contacted a bunch of experts on this disease via email to consult weather or not continued chemo is best for me or not. So, not an awful lot of answers. I also had a blood transfusion yesterday, and it made me feel a bit better. I will go to WTE and try to find the post, I deleted the app from my phone and now I am so bad at going on there to check up on my April babies ladies.

      THank you from the bottom of my heart for your kind words and for checking on me. It means so much.

  3. You're welcome - and thanks for the no update update. It sounds really awful. I so wish this week could have generated better news. And I bumped the post about you on WTE if you are up to checking it out.

  4. Hey, how are you doing? I put the baby to sleep, watched an episode of Breaking Bad (I strongly recommend this show if you have Netflix), and decided to get to bed early, for a change - and am thinking about you. I think about you a lot and am sending warm hugs and love your way.

  5. Hi Kat. You don't know me, I heard about you through Kari (i used to work with her)
    and have been reading your blog ever since. Just want you to know how much of an inspiration you are. I've been praying for you and your sweet family! Keep those positive thoughts! You will kick this monster's ass!