Wednesday, April 17, 2013

Our First Week at Home

Hello Everyone!

Today marks a week of being at home! I sure don't feel like I've been home for a week, rather tired actually... but then again, so is Tom. It's been a week full of a lot of balance in the sense of for every good thing there seemed to be a trade off.  For example, Tom's counts were doing so well, but the list of ailments he's encountered in just the last seven days is quite astonishing.

Speaking of counts, I find that I'm often rejoicing or sharing the current standings of them, but perhaps no one knows what they mean.  That said, brace yourselves as I'm about to elaborate.
The top number is the White Blood Cell (WBC) Count the column immediately after each named item shows the "normal" range for each item.  The third column shows his previous lab draws number and the farthest right column shows the most recent (current day's) lab numbers.  So, white blood cells, if you remember from previous blogs Tom was at 0.0 for a few days while in the hospital.  This sheet shows him at 8.0 on April 14th. 
When I refer to Tom being "neutropenic" it means that his WBC is less than 2.0.  To paint the picture a bit more, the amount of chemo Tom had done between July and his transplant time, took such a toll that when he first started chemo in July he would bounce back out of neutropenia and into "normal" numbers in a matter of a couple of weeks.  Since probably November, Tom has not been in the "normal" range at all.  Definitely since December onward he was considered neutropenic.  Now, usually they will give shots called "neupogen" to stimulate the production of white blood cells for normal chemo patients.  They do not do this for bone marrow transplant patients however, because they want to see your marrow responding on it's own by producing the new persons cells without intervention... this displays engraftment which means the new persons cells are taking.  So, to say that Tom has been less than 2.0 for a matter of months and then after having a transplant he was up at 8.0 without intervention (such as neupogen shots) is seriously remarkable. 
The kicker with these numbers:  Yes, it is completely amazing to see such a come back and the doctor says that Tom's own marrow was so shot from all of the chemo that there is no way that the cells being reproduced are that of his own which shows engraftment of the other guy's cells... but now we must be careful on a different level.  Before we would have to take "neutropenic precautions" which meant that when Tom's numbers were simply low (below 2.0 wbc) he would need to use a mask, not be around young children, no sick people, and avoid certain foods. Now Tom is not neutropenic but he is immune-compromised. This means that while he has "normal numbers" those white blood cells aren't like yours or mine.  His cells are comparable to a new born baby's, but even more susceptible because a new born baby at least carries mom's immunity for a given period of time. 
Tom's white blood cells have absolutely zero built up immunity or immunization related immunity. To boot, his anti-rejection meds work because they too are an immune-suppressant to keep his old system from attacking the new cells. This means that he is susceptible to anything and everything as his body will not have any recognition.  Things like chickenpox, mumps, rubella, pneumonia, flu, etc... total possible killers now.  His cells are not mature enough to receive vaccinations and vaccinations will not begin until 12 months post transplant. 
What does this mean? Well, for starters, Tom is not allowed around children (sorry all of you new mommies and daddies!).  For patients who do have children it is recommended they pull them out of school for the year to minimize carrier-contamination and for those without, they're told to avoid them.  He will not be allowed around anyone who has recently been sick or immunized for anything within 5 days.  He is to avoid large crowds and be cautious in what he eats (ie. freshly prepared food rather than heat lamped Mc Donalds).  Izzy is also having to keep her distance and Tom to be washing his hands after any contact with her.
So there's that. He is under constant watch for risk of infection... so while the numbers are great, they aren't the only factor into his immunity.  In a year he will begin to be immunized and will eventually be good to go again, though he will never have the immune system he once did as his new immune system will always be someone else's and not 100% compatible so to speak. That's the white blood cell count everyone! The rest is pretty straight forward.
Second, they look at his "hemoglobin" which is just regular old red blood.  They want his body to be producing it on it's own and so far it has! They give him blood transfusions when he reaches 8.5 or lower and he has not needed one since before leaving the hospital! He also has not quite made it to the "normal" range yet, but he's getting pretty close!
Platelets: the clotting factor.  These are definitely important though they don't actually do a transfusion unless he's at 20 or lower.  So a much lower transfusion level comparatively, but still a very important thing to factor in because it can put him at risk for internal bleeding, bruising, or general bleeding if he were to cut himself and not have enough platelets to clot.
Lastly, they monitor potassium levels (which they just adjust with pills) and magnesium (which they will do an IV infusion).  These levels (especially magnesium) will frequently be low because not only will chemo cause that (and he's still dealing with after effects of chemo), but also the gen-graf (his anti-rejection meds) tend to burn up the magnesium.  So currently Tom has been receiving a bag of magnesium daily.
So there's your tutorial everyone! You're all professionals now and when someone else mentions it you'll totally know what they're talking about!
How's Tom? warning, this next bit is a little detailed ... if queasy... don't read!
Tom is happy to be home, but as I said... it's been one rough week.  First we had the general issue of him being nocturnal from the hospital and the overnight interruptions.  He came home with some remnants of strep throat and when he would cough it would sometimes cause him to vomit randomly having had no preemptive nausea.  The day after coming home he started with dry eyes (dry eyes and skin are normal, but he hadn't experienced them in the hospital)... his eyes were so incredibly dry that he was having to use the drops something awful in frequency.  The skin all around his eyes was red and his eyes were so blood shot- honestly, it made you hurt looking at him.  If that wasn't enough, it began to go away and then he was super sick to his stomach and they thought he might have C. Diff (a bowel infection often caused by taking antibiotics... like he was for the strep throat), luckily that came back negative (as we actually know of a guy who just spent 1 1/2-2 months in the hospital with a really bad case of C. Diff and colitis). So that went away, but Tom was still vomiting without warning.  We finally think we may have got a hold on that via medications around the clock as he's been vomit free for 48 hours now. Hooray!  However, he may possibly now have a virus of the bladder! Results will hopefully be back in tomorrow.  So he's in extreme discomfort. Seriously, look at this overly long paragraph and all of this was in the last seven days!!!!
So, long nights... tiring days. That said, it's time I go give him his last round of meds for the day and hit the hay myself. Sadly, Helen left today.  This last week that we had time to spend at home with her went by way too quickly.  On a brighter note, her brother will be arriving late Tuesday night to take her place for a few weeks!
Sorry for the long blog, but as the counts are constantly mentioned, I thought people may want to know what the heck I'm talking about!  Also, there's just so much we're finding out now that it really is just a new beginning with new challenges... it didn't all end on March 22nd (and thank God for that!), but rather a new start. Tomorrow we meet with Dr. Carroll, keep you all posted so these things aren't so long!
Lastly, I tell everyone about our ducks that live around the lake at our new apartments.  The two we are most fond of we call "Mr. & Mrs." as they are two younger ducks and are always together!  They waddle along quacking in what I imagine is duck conversation... Mister is quite chatty!  Misses is a lady of few quacks.  Today, just before we had to take Helen to the airport, they paid a visit to our porch for a bit and I was able to snap some photos!  Later this evening they came back by too and were clearly looking for some snacks. Just to put a little smile on your face :)
Good Night!!!!

Friday, April 12, 2013

The Rumors are True... He's Home!

I suppose it might be a good detail to share with the world of non-facebookers (which I am most definitely sure is now a legitimate phrase), but Tom did in fact make it home for Wednesday!  He was actually home about lunch time, which by hospital standards is amazing. 

Monday he had been given the news that it might actually be Thursday or Friday, which was quite the let down for Tom.  I'm not sure that I've mentioned it before, but a guy that he knows via his job at Pool Corp (a customer) who ended up being diagnosed with AML received his transplant a couple of weeks prior to Tom and was discharged a few days into Tom having arrived.  Well, this guy had done extremely well in terms of not having any fevers, reactions, infections, etc...and made it out at Day +19.  Well this guy's "record" (as it were) was quite the talk on the ward.  Not only did Tom want to beat it, but so did an elderly gentleman who was also in prior to Tom (a real firecracker this guy).  Well, the elder guy got out on day +20... which left Tom in the running to beat the record.  This meant that when Tom was told on Monday (Day +17) that he might not be out until Thursday (+20) or Friday (+21)... well, it wasn't so good and I'll leave it at that. 

Tuesday came around and words were spoken that Wednesday might be possible again.  Tom actually had the nurse show him the evidence that the following day was a planned discharge.  All day Tuesday he was charting the foods he was eating (as there was a bit of a conspiracy theory going on that the nurses wouldn't necessarily record all of the foods he was eating as he ate from home, rather than hospital mush so it looked like he had taken the anorexia route).  Tom was really working it at all angles.  Wednesday morning the doctor came in and Tom said, "what's the plan?" to which the doctor said, "for you to go home" (in a puzzled way) and Tom simply replied, "Good. Just checking." 

So there you have it... we made it home.  Tom's been extremely tired, he's also been battling the cough from the strep throat a bit and some random (non-nausea prompted) vomiting the first day or so.  Lastly, he's got incredibly painful dry eyes that have been really making it hard for him.  We got an ointment today that hopefully does the trick because the plain eye drops just weren't cutting it. Other than that, his counts are looking good.  Things are going up, but his cells are still young cells so he's still very susceptible to infection and must take precautions (masks, neutropenic diet, no crowds, etc). He's so happy to be home though and we are of course very happy to have him home.  He's still doing the every morning trip into the infusion center for lab draws to check levels of basic chems and anti-rejection med levels.  Hopefully with the way things are going they'll begin to taper him down to a few times a week instead.

Hope everyone is doing well! We'll do our best to keep everyone posted.  Right now is sort of a slow process of checking him for signs of GVHD and whatnot so hopefully the blogs will be very boring and not so frequent... as that would be a sign of nothing "exciting" or frightening happening.

Love to everyone!  Hopefully soon we'll start getting blog updates from Tom instead of me! :)

Tuesday, April 9, 2013

Fundraiser and Tom's Escape Plan

First and foremost, many of thanks to those who helped with the fundraiser!!! Whether via donating a raffle item or food, cooking, serving, showing up to eat or shop, or those who've sent a donation in their physical absence. We so greatly appreciate it and thanks to all of everyone's hard work, generous donations, and hungry bellies, we were able to raise over $5,000 after paying for everything. That is so incredibly fantastic!!!

Special thanks to Leslie who put on the ring leader hat to make this happen! Many thanks to Ana Thuemler, Jessica Smith, and Eric & Erin Henderson (of E. Henderson Photography) for their support, muscle power and excellent photos that you're about to see!!! :) Thank you to the Manzo Family at Rancho Grande and Brooke of Prime Cut for selling our tickets at your business! I'd also like to put an incredibly gigantic thank you out there to the Mesker family who with one day of notice took on the role of the chief bbq masters and made our fundraiser the success it was!  Thank you to our baking elves as well!!! No sweet tooth went unsatisfied, that's for sure! So thank you, Lindsay, Teri, Vera, and Amanda! Also, thank you to Michelle Haggard for getting the word out there via the news! So awesome!!! So many many thank you's to be said so do know how sincerely grateful we are for any part that every one played with the fundraiser!!!

 Helen measuring an "arm's length" of raffle tickets for Brant who went on to win a crocheted purse and jewelry box.
 The many, many cupcakes, cookies and brownies that went on to make the "dessert" table! All of the orange is for the leukemia ribbon color! :)
Flowers for Ana, Erin, and my mom. :)
The tons of meat being cooked by the hard working grill masters!
Our live entertainment provided by the wonderful Michael Smith!
The two goofballs responsible for all of these amazing photos! Also, to put a plug out there... Eric is very much serious that they should go back for the UK cycle race in July, right Eric?
My wonderful get-up to help Leslie and Laura with the raffle. Literally, could not see a thing.
The beautiful Amanda and Ana
The Moms: Helen, Marya, and of course myself.
Hey! She stole my hat!!!
I love this photo! Carlos was so awesome! He came out to d.j. for us for a bit and of course Sylvia just brought the party with her. :)
One of the couple of super winners! (a few people repeatedly won raffle prizes... something fishy going on there!)
The folks you need to watch out for when visiting Corning!
Headquarters: Raffle Tickets, Dinner Tickets, T-shirts, Hand blown Glass items... you name it.
Having some photo booth fun! Helen was getting ready for her retirement in Florida!
Raffle time!
Helen and Cindy running the tickets!
Delicious tri-tip and chicken. This photo makes my mouth water (figuratively).
Raffle Items! The gorgeous gift basket from the Cranes!
An example of my lack of ability to see with the glasses on.. I couldn't even walk. Notice my dad's supportive concern in the background. haha
Raffle Table
More of the raffle items
Teri and Scott... Aren't they so good lookin'?
The hungry crowd and oh so wonderful servers! If you winked at my dad you could get an extra slice of tri-tip.
Hazard Family, Rockin' it as usual!
Mom obviously abandoned her station as chief bean disher. You'd think she was a union worker or something.
Lindsay's super amazing brownies!!! SO good!!!!
The photo booth props!
 So Groovy!
 Team Tom (though we failed at showing the writing on our shirts haha)
The best lookin' gals in town! hahaha! (Yes, also the ones forewarned of earlier)
Anyhoo, so as you can see... lots and lots of fun! THANK YOU!!!!! Many, many thanks to all of those who were able to make it out! Thank you to all involved! We are so grateful!!!! Thank you to Erin and Eric for capturing the day for us to share with others and especially to share with Tom who couldn't be a part of it.  Next time :)
Tom's Escape From the Hospital:
So, I'd promised via facebook last night to provide a blog today and the reasons as to why Tom would not be going home tomorrow.  Turns out, since that time, the doctor is now saying Tom may be going home tomorrow!!!! They are starting him on the gen-graf (anti-rejection) pills tonight and if his counts and stuff are good tomorrow, he'll be good to go! Hooray!!! They were going to have him wait because the last two days he's been vomiting and also ran a little fever yesterday so they cannot let him go home until those anti-rejection meds are okay to be taken by mouth (as opposed to the IV form he's been on).  Also, he wasn't eating as much as they would like to see and his counts weren't were they needed to be, but all of that seems to be in his favor now so his goal of Wednesday is looking possible!!!!
Funny Tom moment:  The nurse was in taking his vitals and I asked her if she had cut her hair (it looked different). She replied, "Oh no, I curled the ends a bit and used a headband!"  Tom looked at her and said "I didn't do anything with my hair this morning!"  haha (as it's all missing). 
In getting ready to leave tomorrow, they will be removing Tom's PICC line... he's apparently kind of sad about it, which is particularly odd given how much he complains about it.  He says it's now a part of him.  How funny!
Fingers crossed for tomorrow, folks!!!  Tom says to let everyone know that he's "hanging in there"!  

Tuesday, April 2, 2013

The Sandman Needs to be Fired

Hello Everyone!

Today is day +11, Tom is still at 0.1 WBC but that's still better than being at 0.0 which is what seemed expected.  He has had a couple of looooooooong nights.  Sunday night Tom was up in extreme pain about every hour asking for meds or something to help because the sores in his throat were so bad he couldn't swallow his own saliva without nearly being in tears. 

This continued through the day yesterday and he was super tired due to the lack of sleep over the night.  He was not able to eat much, he managed some Ambrosia custard (about half of a can/"tin" for those in the UK).  He has one of those dentist suction tubes to use so that he doesn't have to swallow, just to paint the picture of how much his poor throat is hurting.  Also, Sunday night he started with a low grade fever and eventually progressed over 101F, so they took blood cultures and began the broad spectrum antibiotics.

Tom's had all of his meds that can be switched to IV, switched to IV form.  Last night the fever came back on a bit, he was feeling terrible, had been utilizing pain meds all day long to ease his throat... and last night he just simply went to sit up to call the nurse for more pain meds and began vomiting as well. This continued all night.  Of course he hadn't eaten anything (but that custard), so there wasn't much substance to follow, but the poor guy kept being sick.  So night two of no sleep. 

They said this morning that apparently with his pain med dose having been upped (doubled, in fact for the dilaudid), that having it more frequently and more quantity, his nausea could be coming from that.  So, this morning Tom decided to quit the pain meds.  He is literally having to trade one thing for another it seems. 

We tried staying awake as much as possible today so that he might sleep tonight, but he is just so run down! It's exhausting being in pain, very tiring being sick, and I'd imagine his body must be completely shattered trying to produce a new immune system!  So there's that.  He has been fever free since early this morning and we haven't had any further vomiting occur since early this morning either.  With any luck, we may have a doable night. If not, seriously... the sandman needs to be fired because he is failing miserably at getting Tom some sleep (and myself included by default). 

His cultures have come back gram positive which leads to a specific family of bacteria (e. coli, vre, staph, strep, etc).  The cultures haven't grown quite enough to be 100% certain, but the doctor says he can say with pretty good certainty that it looks to be strep, which makes sense given his throat/mouth sores.  Good news is, unlike some of the others, strep responds well to the antibiotics which is most likely why he didn't have the fever as long as he has with past infections. Still painful and annoying for Tom.

Side note: his hair is falling out in rather large quantities, today I looked at him and half of his mustache was missing, literally. We had a good laugh.

In other news, we were literally on the news tonight!  Thanks to our friend Lauren who had the connection so to speak, yesterday a reporter came down and interviewed me (Tom was supposed to be involved but felt like he'd been hit by a freight train... and couldn't talk, so I assume the interview process would not have worked).  You can watch it online here: KHSL Video .  Thank you Michelle for taking the time to come down to Sacramento and put together our story. We super appreciate it.

Tom's Blog Input:
Tom would like everyone to know he feels sorry for people who have mouth sores a lot. He says he's in complete agony and really struggling right now.  He's hoping for 0.2 white blood cells to register in tomorrow (the doctor says he's hoping for maybe 0.3).

Fundraiser Dinner!
This Saturday is the Fundraiser at Woodson Park in Corning!!! 4-8pm!  We have a lot going on: music, photo booth, silent auction, raffle, bbq chicken & tri-tip dinner, and tons of fun! The auction and raffle will be full of awesome goodies! We have an Oakley sunglasses basket, Mary Kay basket, Lucero Olive Oil and New Clairvaux Wine basket, Starbucks gift basket, Restaurant vouchers, bowling gift certificates, hair gift certificates, seriously we are loaded with goodies!!! Tickets are $10 for adult, $5 for children. We will even have a drive-thru service for four (2 adults, 2 kids) for $25 for those who can't stay.  So mark your calendars and please share with everyone! Tickets for the dinner may be purchased in advance at City Hall, Prime Cut Hair Design, Rancho Grande, or at the "door" the day of the event. Hope to see you there!

Also we will be having t-shirts available to purchase! Men and Women's. We have women's sizes s-xl and men's sizes s-xxl.  One shirt for $25 and two for $40!  The Yorkshire Rose on the front is the symbol of where Tom is from and the back reads, "Team Tom 03.22.12" which is his transplant date/"Second birthday". The actual shirts will be a light gray color rather than black.  Ignore the red writing as it's just the dimensions of the print/rose. 

Monday, April 1, 2013

Certainly No April Fool's Joke

I'm not particularly sure where to start so do excuse me for the train wreck of a path of thought you will be processing in a moment.  Tom has been itching to get out of here since he set foot in here. He has come up with many of reasons as to why he should be either a. allowed to go home earlier than everyone else or b. allowed to go home for a couple of hours if he promises to come back.  He has told the doctor that he lives closer so he is less at risk than those who live an hour or more away, he says it would make his atitude better and his overall mental status better for recovery, he even told the doctor (which the following is true) that all of the women (the bmt ward is full of women and their family members visiting) on the ward have been telling him that he is "too good looking to be in here" and that he must go home so that everyone else can feel better about themselves!  The doctor of course asked for some names as to who were saying these things, but truly it's been everyone... he's quite the heart-throb around here! 

Lastly, he told him the other day, "Look, Ken (a patient he knows outside of here) got out of here at post 17, so I'm going to beat him and I'm leaving Saturday."  The doctor who has been telling him much differently each time he gets Tom's ideas submitted for review, looked at the board, looked at Tom, and finally replied, "That's not impossible."  He told Tom to expect to see his counts coming up toward the latter end of this week, Tom replied, "I'll be on the board by Tuesday."  The doc chuckled and again said something to the effect of it not being expected, but not being impossible. Typically speaking, white blood cell counts don't start to rise until about day +14 and yesterday was only day +9 making Tuesday only day +11.

Well if Tom's determination wasn't enough, I did recall his massage therapist who used to come around, using some frankencense oil on him before and saying it stimulates blood cell production.  She however has been MIA since we've been in and no one seems to have a clue what has happened to her. Yesterday, after Easter Mass and having a word with the big guy upstairs and lighting a few candles for Tom, I went on a stroll. I'm looking around for somewhere to either be nosy about or find a bite to eat.  A place catches my eye with a sign that reads Brunch, I look and it looks to possibly be a religious establishment which I was on the fence about venturing into.  I look closer and it just says, "mind, body, and spirit."  So I declared it safe, but walked in very cautiously.  Greeted by three women who said, "Wanna know what this is all about?"  I replied, "I'm wanting to know about brunch."  The woman who'd greeted me verbally then stood up and said, "I'll show you the way!"  She led me through a beautiful courtyard and past a few rooms, one of which I could smell various scented oils so I asked, "Do you sell oil? If so, do you have frankencense?"  I'll quickly wrap this bit of the story up with saying, ladies and gentlemen, I found the missing masseuse!!!! She was there!!!!  I also happened to find the most heavenly and I mean heavenly french toast at this wholistic place that I have ever encountered in my life... if you could be enlightened by food, that's what happened to me yesterday.  Anyway, the sweet lady gave me a free little bottle of frankencense and told me to massage just a tiny bit into Tom's feet (which the thought of feet is repulsive to me, but I did it out of love and determination). 

Last night, after telling everyone about how well Tom was doing minus these awful sores in his throat that are making it impossible for him to even swallow his own saliva without the feeling of razor blades in his esophagus.... I clearly had spoken too soon.  He ended up registering with a fever of 101.4.  They start blood cultures and broad spectrum antibiotics at 100.4 so when he came in at the 101.4 level they of course did all of those things.  They said that the sores can cause a spike in temperature due to the inflammation they cause, so he might not necessarily have an "infection" but it takes about two-three days to grow the cultures to know for sure so the antibiotics must be going as a precautionary measure.  Then the nurse said, "Also sometimes when your bone marrow starts to reproduce again, it can cause a spike of a fever." 

Ladies and Gents... Our Easter miracle this year.... Around 5:00am his lab reports came back and Tom registered in at 0.1 White Blood Cells!!!!!! A day early to his goal that was seen as highly skeptical by the doctor.  Since then he has dropped back down in temperature and his last reading was 99.6 I believe so let us keep those prayers going that the fever was just due to that marrow kicking in!!!  On the flip side, having those white blood cells means they're now combatting those throat sores which is a good thing as they'll be gone sooner, but it also means they're quite a bit more painful today.  But WOHOO!!!! He never ceases to amaze me what he can do with some determination, he always manages to show the doctors that it's not always what they think. Though I did tell him I'm going to take a little credit for the frankencense foot rub haha. 

This is the board they put his counts on every morning. That was supposed to be 0.0 for a few more days!!!!!

Though long, I hope you felt this blog well worth it.  Hope you've all had a wonderful and blessed Easter Holiday!