Tuesday, June 22, 2010

The one where the Universe decides to see how much I can take...

So we have two Doctor's appointments down this week for Mike and both went well. The Surgeon is pleased with his progress, but told him to take it easier and not be in such a rush to get back to work. I resisted doing the "told ya so" dance. He made another appointment for two weeks and said absolutely no work. He had also done a chest x-ray, which is looking good. Today we saw the kidney specialist, who also said Mike was doing well. He did repeat blood work and Mike's hemoglobin has climbed back to 12 (almost normal!) on it's own. This is an awesome sign that there's no further internal bleeding. He also concurred with the two more weeks of no activity. Of course, Mike is chafing at the bit. Fortunately, these short jaunts to town make him realize just how weak he still is.

As if we didn't have enough to deal with...bring in the workman's comp case nurses. For real ladies? First they wanted to come into the Dr appts with us. Invasion of privacy much?? I put my foot down there. But they do come in and talk with the doctor (with us present) at the end of the appointments. And ladies...you can stop telling me how you don't really work for the insurance company and you are there on our behalf since every question you ask is geared towards how soon my husband can get back to work. Trust me, no one wants that more than him. But no one is more determined to see that it doesn't happen until he's recovered than me. And I thought you were nurses?? Seriously, even I knew that the recovery period for major surgery is 6 weeks and that's not counting the trauma and broken ribs. You better tread lightly.

And then there's poor Lu. Who was it that said "If you want to make God laugh, tell him your plan"? I guess that applies to the Universe too. Because the Universe sure screwed up my summer plans. And now it's decided to play hell with Lu's school plans. While her Dad was still in the hospital I noticed that she had several awful bruises and was looking pale and tired. Well, of course we were all stressed and not getting much sleep, but my "spidey senses" kicked in. I told her to get a blood test since she hadn't had one in 6 weeks. (Since her platelets had been holding their own at a safe level, the doctor was letting her go two months between appointments.) She argued that she didn't need one, didn't want one. We bickered and finally her Dad threw his weight on my side. The Monday he got out of the hospital, Lu had a blood test and received a frantic call from her hematologist's office. Her platelets had nose-dived to 21,000. We saw him the next day and he explained that since her ITP was recurring it was now classified as chronic and we'd have to look at treatment options. Lu cried. She told him that she didn't want to be on steroids for a year again (the side effects are nasty). He gave us a few options, though he recommended removing her spleen and prescribed some high dose steroids that she'd take four days a month.

The high dose steroids worked and this week her platelets had jumped to 245,000 which is firmly in normal range. But the steroids caused insomnia and muscle pain. We did our research and sadly there are no good options. There's the steroids, but they have harsh side effects with long term use and only buy her a couple of months at a time. She's not a candidate for another treatment because she has RH negative blood. The platelet growth stimulator's only buy a small bump in platelets and can mess with your bone marrow chemistry causing other problems. Also, they are so new that no one knows the long term effects. The Rituximab might buy her a few years of normal platelets but again has harsh side effects and is the doctor's last resort. IVIG infusions only buy a couple of months at a time. With the splenectomy she faces the same infection risks that her father now does. But the chance that it could cure her condition are 65% for a complete remission. Her age and relatively short duration of disease (18 months) puts her in the group that has the best chance. If not a complete remission, it could at least buy her 2-5 years of good platelets. It has been a heart wrenching decision, both for her and for us. But she decided to talk with the surgeon (the same one who did her dad's surgery) about the splenectomy. Oddly enough, their appointments are the same day, one right after another.

Since she works at the camp for kids with disabilities in July, she's hoping to schedule her surgery for the first part of August. This means she won't be moving that month. The move and school will have to be post-poned. I admire the fact that she doesn't whine and cry and ask "why me". Don't get me wrong, there've been a few tears, but mostly she just deals. She gets that from her Dad.

So by the time Mike is ready to vacate the sickroom, I'll be moving Lu in. I'm thinking of putting a revolving door on my office. What do you think?



  1. Thinking about you guys all the time. Grrl, you need a mental margarita. Hugs.

  2. Looks like your plate is still full but it appears you have a handle on it, stand your ground with the workmans comp nurses because this is all about when he is able to go back to work not when they decide to write it off, at least six weeks I agree with you there.

    Lu will be just fine she sounds like an amazing girl you have to be proud of that.

  3. Ohh please be very careful and watchful of those Workman's comp nurses! They are very crafty and will do just about anything to get the matter as cheaply as they can! I sure wish yall had a lawyer to deal with them. Ours was a blessing.

    So sorry the universe is messing with you AGAIN!

    Always thinking of you and your family.

  4. Wow...you are made of some strong stuff Spot...the universe just keeps slinging the crap at you and you just bat it away like it was nothing! You amaze me...I am in awe and you and your family are always in my thoughts!

  5. Ditto what Brite sez.


    If I can do anything, just let me know. It's helpless being all out here and not even able to bring you a casserole.

    Take good care.

  6. Double Ditto to Brite and Dani. Your strength is inspiring!
    Sending all good stuff your way.

  7. Lots of hugs to every. single. person. in your family. I love you, lady, and I it is crazy - - everything you're going through right now. It is a comfort to see how close you all are, and how you move forward with hope and determination. What examples!

  8. Oh man, your family is in my thoughts for sure.

  9. Honey, I'm so sorry about Lu. Your life lately gives new meaning to the expression "When it rains, it pours."

    Surely you're due for some major R&R in the near future? Getting the next 10 years of trauma over with now? On the accelerated plan??

    You're always in my thoughts and prayers...and know I'm only a phone call away...

    hang in there...and try to take care of you...

  10. I am thinking this needs to be the last surgery! Oh for goodness sakes! But if it makes her better and healthier (and not on steroids) then good!

    I know it will be hard for Mike to stay down and her to stay her plans. I think the universe is definitely teaching you guys patience. Big hugs and prayers for you!

  11. Ditto what Kathryn says! Poor baby! (babies... you and Lu both)

  12. Oh my gosh, the Universe just won't stop! Ditto to what Kathryn says. Let's hope you get a nice long break after all this is over.