One more day...

February 25, 2013

After a morning's worth of silence from doctors and nurses, we finally got to hear from the doc on call, who was great, that she talked with our oncologist in Denver and under no circumstances is she to be released until her neutrophyls are above 1.  They were measured at .44 this morning, and 11 yesterday.  We are less than halfway there, but went up hugely from yesterday to today.  Our oncologist said encouragingly however that once the improvement starts to happen with white blood cell counts and neutrophyls and such it improves exponentially, so that's good.

I have to reimburse you for your $150 after the biology lesson yesterday because it turns out I was wrong.  I told you that her neutrophyl count on Saturday morning was at 7 and yesterday morning was at 11...I was wrong it was not 7 and 11 absolute neutrophyl count as in actual neutrophyls, it was 7 and 11 percent.  Its so interesting to have 5-6 different health professionals throw different numbers and acronyms and names of stuff at you...one tends to get a bit confused.  Of the white blood cells that any one person has in their body, a portion of those cells are neutrophyls.  Neutrophyls are the actual fighter cells, they are the ones that kick the ass of any virus/bacteria etc and a normal range for those is 50-60%.  Now, that having been said, we've been told that her count needs to be above 1 before she can go home, and I actually interpret that to mean that the actual count is above 1000, not that she has to have 100% neutrophyl count.  That's what I mean about 5-6 different health professionals throwing information at you...they all use their own language.  Our oncologist is looking at a neutrophyl count of over 1000, which means that her percentage would have to be 50% based on her total white blood cell count as of this morning, which was 2100.  Make sense? Clear as mud?

Me too.

Boobies.

So...all this means that we are staying another night, which frustrated the girl quite a bit.  She reeeeeeally wants to be at home right now and in her own bed, having taken a shower in her own shower and eaten out of her own fridge.  It sucks royally, but its better this way because if we went home to early and she got reinfected, it would be far worse than what she and we have experienced already.  So...we stay.  Our nurses and the staff have been really great, we've gotten several flower deliveries and treats, I even got a canadian bacon/pineapple/jalapeno pizza delivered a few hours ago! We're spoiled, thanks for taking care of us :)

Please pray for her counts, that her body continues to rebound as it has been, pray for her heart because she just wants so badly to be better and be home.  Its been rough on her.  I'm doing ok, the bed I'm sleeping on is something akin to what I imagine it would be like to sleep on bubble wrap covered in cellophane - its less than exciting.  I scare myself awake every time I roll over.

I'll give a giant hug and a big, wet kiss to the first person to hit up a S-bux and bring me a Venti Pike Place, black, no room tomorrow morning.  I think I could lubricate the engine of my truck with the stuff they serve here. I've got another hug for the second person to do so.

We're good.  I actually mean that.  Her body is on the way up, there is a good chance we will be able to stop antibiotics tonight, she's had a 98 degree temp for almost 24 hours now which is one of their criteria for discharging a neutropenic patient. (Neutropenic = fever/infection due to extremely low white blood cell/neutrophyl levels) We aren't 100%, but man it is so much better than it was on Friday/Saturday/Sunday.  I refuse to blow smoke here, we've been finding out today that the place she was at was potentially pretty life-threatening in terms of the things that could have happened had we not gotten her into the ER when we did and started to get this stuff under control.  Her counts were low enough that she very literally had virtually no ability to fight anything off herself. She herself was not actually in any danger because she was in the hospital and receiving care in time, but had we not...it could have been much uglier.  

We are blessed.  In no sense do I intend to cheapen that statement with fluff or nonsense - I mean it, we are blessed.  We are blessed, it could have been much worse and we have been well loved and taken care of. It's been an awful weekend, and we need to be much more careful for the next 3 rounds of chemo. But we know now what to do, how to take precautions, how to keep her safe and what to do if something happens again. So, we just wont let any of this crap happen again.  Simple enough!

Would someone please do me a favor?  Go outside, make a huge juicy snowball and throw it as hard as you can at the nearest innocent bystander?  Not because I have pent up anger and need to take it out on someone or anything, just because there's 6 inches of snow on the ground and I've been stuck in a damn hospital room for 3 days.  It would just be a shame to waste all that snow, ya know? I just need a little vicarious living.

Thanks folks, have a great evening!  I'll letcha know what the plan is tomorrow!

Much love,

Jeydrienne

We digress...just a little

February 24th, 2013

Howdy,

Quick note, she started to slip a little this afternoon, got the shakes worse than I've seen at all in this process.  They have given her a pain pump, with an itty bitty little dose of Fentanyl, (a narcotic) because of the pain in her mouth. She has this nasty sore throat that they can't seem to identify the cause of and started to get flem(ier) like I mentioned.

Oh there it is...I just realized why "flem" looked weird...its p-h-l-e-g-m.  I'm an idiot.

ANYway...the sore throat thing really sucks, hence the pain pump.  She has not however had to use it which is nice because narcotics and her get along like ___ and ___.

Becasue of the extra p-h-l-e-g-m, and some difficulty keeping her oxygen levels up they decided to do a chest x-ray to rule out pneumonia, which they were able to do - chest is clear!  The blood cultures from yesterday morning were also clear, so that means that so far they have found no existence of a bacterial infection.  Which is great.  That does not however remove the fact that something is infected and the general belief right now is that its viral.  Which sucks. Antibiotics don't take care of that.  However, I still stand that we are headed in the right direction and our doc was supremely confident of that as well.  We've had for the most part superb care here (I had to take one nurse out back and have a "win one for the Gipper" with her, and we actually ended up politely requesting a new nurse - we got the nurse from yesterday though and she is great!) and we're pretty happy with how they are choosing to tackle her care.

Please, please continue to pray for her health.  Specifically for white blood cells and neutrophyls to come up.  Quick biology lesson here: of the white blood cells that one normally has, a safe range is 4,000-10,000/15,000 white blood cells per cubic milligram (or milliliter, can't remember) of blood. Of those white blood cells, 50%-60% of them are neutrophyls.  Don't ask me what the heck a neutrophyl actually is, we just know they are the footsoldiers of the immune system.  Adrienne started out yesterday morning with 700 white blood cells and 7 neutrophyls.  Yes, 7.  This morning she was up to 1,100 WBC, and 11 neutrophyls.  Make sense? That's why we are concerned, this is an extremely low number obviously.  A doable neutrophyl count is 500, according to our doc.

That will be $150 bucks please. 

She is better now than when I started this email.  The chills are gone for now, she is warm enough, had a few M&Ms which if you've ever met my wife the sugar-Nazi, you know THAT"S a big deal.  For now we are good.  A scare this afternoon, but we focus on this minute and the movie thats on and the comfort she is currently in.

The prayer at this moment is for her body to strengthen what we have been told is probably viral.  Since all the cultures and swabs (that measure bacterial infections) have come back negative, the next most likely suspect is a virus.  Unfortunately, antibiotics don't work on viruses.  Ya just gotta tough it out.

So...that's that.  Hope you a reading this while sitting in front of a nice fireplace with a cup of cocoa or something in your hands.  Take a swig for us.

Love, love, love!

J

The Dark Days of Chemo

February 23, 2013 

Well folks, chemo sucks. It has been a miserable 3 days ever since Thursday. She started her period on Thursday, which also happens to be the 7^th day after chemo which is the beginning of a 3-ish day period of especially high risk for a chemo patient.  Between 7 and 10 days after an infusion is when your White Blood Cell counts are the lowest, which makes a chemo patient really susceptible to infections.  Which after starting a naaaaaaaaaaasty period (we understood that it would be really ugly after the fertility preservation process because of all the hormones and stuff that they give you – it sends the body into a tailspin which creates a really ugly flushing process…hence to painful and heavy period) that was the straw that broke the camel’s back. Let me paint this picture for you:

She goes to work on Thursday morning, feeling a little wonkey, but overall not bad.  This was following several days of joint pain, nausea, lethargy and exhaustion, weird little aches and pains that had no pattern or reason to them, poor sleep and a super-high emotional state. About noon on Thursday she starts to feel pretty ugly because her period had started and it was pretty heavy.  Again, to be expected. By about 2:30, she’s calling me saying that if the cramping and pain gets any worse she’s going to the hospital.  So, I left work and spent the afternoon with her which was actually relatively calm and nice.  By Thursday evening, we started the cramping and pain up again, and she got very little sleep, was pitching and rolling and moaning all night and very uncomfortable.

Friday morning was ok, I ended up going to work for a few hours and her mom came up to be with her while I was gone.  Friday was uncomfortable overall for her, she was laid out on the couch for the most part, although I guess she did at one point get up and do some minor chores around the house and get some movement in which at the time anyway felt good to her.

By Friday night she was teeth-chatteringly cold, achy, I literally couldn’t touch her because her skin was so painfully sensitive and hot to the touch.  I don’t mean warm, I mean hooooooot.  Again, she was feeling extremely cold though, so she sat in the shower with the water running over her head until there was no hot water left, and then she sat in front of the fireplace, WITH a space-heater in front of her, WHILE I blow dried her hair…and THEN, in the microwave I had heated up some cloth bags full of corn that I then put under the covers of the bed which she then crawled into once the spa treatment in front of the fireplace had concluded.  Now, to a normal person this sounds miserable, but she was loving it.  Little did we know, this was because she was developing a nasty fever.

All day on Friday she was running a low-grade fever in the 99s.  About 8pm, I took her temp again and it was actually back down to 98, and then I checked it at 10:45 and it was at 101, and then at 11:45 it was at 102.  The cutoff at which you are supposed to get in touch with the hospital as a chemo patient is 100.5, and the reason that we didn’t immediately call at 10:45 when it was 101 was because of all this heat treatment that we had done, I was hoping that maybe I had just heated her up too much and that that was why her temp was up.  How wrong I was…We checked an hour later and because of all of that heat, even though it made her feel better, it actually drove her fever higher.  Obviously.

So, we called our oncologist, and she of course said get to an ER, ASAP.  We got to the ER at about midnight on Friday night and they did every fluid test known to man to try to find an infection - Blood, urine, spit, tears, sweat…just kidding on the last 3, but the blood and urine, yes.  This took foooooorrrrrrreeeeeeeevvvvvveeeeeeerrrrrrr.  They swabbed for flu and strep which both came back negative, but 4 hours later, upon another consult with the oncologist, they decided to admit her to McKee Medical Center because the fever was still there and she still felt like death warmed over.  So we got here to McKee about 5am this morning (Saturday) and have been here ever since.  They have put her on 3 different, bodacious antibiotics, IV fluids, and Tylenol.  We are going to be here until at least tomorrow, depending on how long it takes to get the fever out and to get the White Blood Cell counts up.  Her WBC count was .7, and the safe range is 4-15…so obviously, ugly.

She is resting now, very tired, achy, lethargic but restless…despite all of that, she is actually doing better than she has in the last few days. Last night, you could have whipped out a good Denver omelet and a few flapjacks on her thigh, now you’d be lucky to get an egg sunny-side up.  Her skin is significantly cooler, which is really great.  I’m not joking, her skin was shockingly hot to the touch last night. It was creepy.

The hope and the prayer is that we can go home tomorrow afternoon.  It’s hard because she needs the antibiotics to get this infection down.  We are waiting on some blood cultures and a few other tests because as of right now there we don’t know specifically what the infection is.  A few lymph nodes on her neck are swollen, which is good cause it means they’s doin their thang. The thing that sucks is that antibiotics also kill all the good bacteria, and she’s been told to just expect to get a yeast infection out of this deal, and her digestion will be jacked up for a few weeks and so on and so forth…suuuuuuuck.

Please pray for my girl – pray for healing, for rest, for comfort, for her fever to permanently break, for her aches to go away, for sleep and for her emotions.  She’s had arguably the most difficult 10 days of her life.  I also need prayer for rest, sleep, patience, and my ultimate reliance on the Lord.

My most humble thanks, we love you.

Jeydrienne.