Smart Mouth

So, I talked to Stacey this morning and she asked that I update everyone again.   I apologize if some of you have talked to her or K and already know some of this stuff, sometimes she gets a wee bit confused over who has heard which part, which is why I write the updates.

We hadn’t spoke in a while; I have never been in a situation like this and I am not sure how much is too much and how much is too little, I am sure some of you feel the same way.  I thought she might be tired of talking about it all, or talking in general.  Turns out I was right… partially.  She was just too tired to talk, and has been in a lot of pain.  She has been having pain in her back and ribs, sometimes too excruciating for her to be able to lay on her back or sit upright.  She has had three cat scans, but they still think it is just fluid on her lungs that is causing the pain.  The fluid in her lungs is from a combination of the surgery (c-section) and the platelet transfusions.  The last few days she has gotten more rest, and has been able to increase the pain meds to a level where she has been able to be up and about more often.  Standing or sitting makes the fluid move to the bottom of her lungs, and this has made the pain decrease and also made it easier to breathe.  So she was feeling “great” today she said, so she was making some calls. 

Chemo started monday, and will continue until this coming Monday.  They had trouble inserting the port they wanted to (because her numbers were still so low) so they ended up putting in a port that needs to be changed out in a week.  Hopefully her counts will be up enough then for them to install the port they prefer.  The chemo is a continuous infusion of chemo, which means the entire week – 24 hours a day she is getting chemo.  That is why it is considered to be such an intense treatment, because there is no break for a whole week.  She is feeling good so far, they have given her huge amounts of anti-nausea medicine and so far she hasn’t been sick and she says she is tolerating it well and not feeling any side effects yet. The doctors said it will hit her harder next week, which is why they have decided to keep her in the hospital.

A week after chemo ends she will have another bone marrow biopsy.  If the leukemia cells are less than 5%, she will be considered in remission.  If they are above 5% she will receive another intense round of chemo as soon as possible (probably a week after the biopsy.)  Either way, above or below 5%, she will probably need a bone marrow transplant.  They will test her brother first, then other family members, and they also saved cord blood so that will be tested too.  If there are no matches, then there is a possibility anyone else willing to be tested will be able to do so, and she will be added to the national data bank.  I asked how any of us would know if we could be candidates and she is going to try to find out… (I can’t be, because of my RA, but I thought maybe someone else might want to be.)

As soon as the chemo started her platelet counts went up… even after so many transfusions that she has lost count, they did not go up, but after the chemo she went from a count of 17 one day, to 22 the next, and then 40 the next day.  She was back down today, but the doctor said that was normal.  It is pretty amazing how her body has already responded though, and makes me want to think that it wants to heal as badly as we are all praying it will.

Also, a lot of you have asked how this could happen to her, and her doctor provided a little clue the other day.  He asked Stac if she ever worked near airplanes, because there was a chemical that is in airline fuel that can cause leukemia that is still in her blood.  Those of you that know her, know that she worked at the MNPLS airport for over two years.  I did a little research when I got home, and found oodles of articles on benzene (a chemical in airline fuel) causing leukemia.  She couldn’t remember everything he said, but is planning on asking him about it more later.  I talked to Kristi (my BF) and she asked how on earth that could be possible.  I can only speak to research I have done on my RA (since I have no family history of it) and I have read a lot of research that suggests that people that have a genetic predisposition for a disease can develop that disease when exposed to a biological trigger.  So I would surmise that this would be a similar situation.  It is just speculation on my part, and I suppose we will learn more as time goes on, but it sure seems a plausible explanation for why an otherwise healthy young woman suddenly becomes this ill.

Stacey also asked me to tell you all that she is trying extremely hard to find a way to have an internet connection.  K is working on trying to get his cell phone to access the internet, so then they could plug in to that.  Unfortunately, this hospital is not as nice as the old one and they do not offer laptops to be checked out.  She wants desperately to talk to everyone, and be connected again, and I know that K will not stop until he finds a way to do that for her.  Hopefully it will happen soon.

Please continue sending her your sweet comments in her guestbook, because I know they will touch her deeply when she is finally able to read them.  Also, I will again be calling her to write her the comments you leave her here.

I forgot to add that as usual, her spirit and attitude were amazing to me.  She made me laugh outloud a few times.  She told me a story of how at one cat scan, with a particularily jerky doctor, she kind of lost it emotionally because of the pain of having to lay flat.  K made the dr call Stac’s nurse so he could talk to her, and the nurse came down with two shots.  After the first shot she remember nothing, but later that night K was afraid to go to sleep, because she kept popping upright to say things to him.  For instance – (while pointing at the infusion pump on the floor and laughing) “That pump keeps opening it’s mouth and laughing at me!” and at one point she claimed an outlet was smiling at her. 

Also, I want to say a few words about K.  I have always thought K was a great guy; I have known him 14 years now, and while there were times he was a little stubborn, I have never once questioned his love for her.  But now, I simply can’t imagine a husband being any more supportive than he is being right now.  He is still staying with her every night at the hospital, and once on the phone recently he made me bawl talking about her, about what a kind, sweet, and beautiful woman she was and how scared he was.  He amazes me everyday too, and I am so very proud to call him my friend.

I also forgot to say that Stac’s mom is planning to bring the boys to the hospital Christmas Eve, so they can open their present in front of Stacey.  They are trying to find a Santa that can come bring their present to them… so if there are any friend’s hubbies with the willingness and capability to play Santa on Christmas Eve, let me know.  They are hopeful the hospital will have one they can use, but as of today they hadn’t found one.