Xfinity High-Speed Maid Service?

Today is “Day +4”.  My ANC dropped to 22 today (pretty much as low as it can go).  Doc was just here chatting with me and said that I’ll most likely hover here for the next week or two.  I am so anxious to just see the numbers start rising so I know “it’s working”.  Just doing my best to be as patient as possible and “ride the wave” as my cousin Kristi says J  In the meantime I’m just doing my best to manage the side effects of the chemotherapy which have hit me kind of suddenly but the docs and nurses are doing their very best to manage the discomfort for me with additional meds.

A volunteer came by my room today…he is a former BMT patient (had his transplant 8 years ago).  Like me, his brother was his donor.  It was great to visit with him and he reminded me several times to be very cautious when I go home not to get complacent.  He said he’s been volunteering at the hospital for many years now and has seen patients come back a few months after discharge because they get really sick and kinda “slacked” when it came to being vigilant about food prep, cleaning & making sure they are getting enough rest.  I DEFINITELY don’t want to come back (1 month is more than enough in my book!) so I am going to have to keep reminding myself not to push it too hard and to remain vigilant about handwashing, food prep, being around others who are sick, etc.

  

So here at the hospital they have a tv service that scrolls messages on the bottom of the screen (kinda like the news) but it is interactive & you can request services through the tv.  I think it is hilarious because yesterday it popped up with “does your bathroom need to be cleaned?” and I was supposed to select yes or no on the remote.  I couldn’t help but think how lovely it would be to have this service at home through our cable service at home!  How nice would it be to be able to just hit a button to select yes on the tv at home and have someone come clean my bathrooms J  That would actually make me feel justified in paying the outrageous amount we used to pay Comcast/Xfinity for cable every month! Lol

-Chellie

Life in the joint

Day 10 in the joint…I got to leave the hallway today!! Monday is “chest x-ray day” around here (to make sure patients don’t develop pneumonia from being in bed all day).   They let me walk down to get my weekly chest x-ray.   Simple pleasures…but this was the first time in 4 days I’d left the 100 ft hallway of the BMT unit and usually they take patients in wheelchairs or their beds but I asked my nurse if I was allowed to walk & he said he was cool with it!  J Nurse Ryan is a cool dude! J  He has been my nurse 2 days in a row now.  I just finished a great book,  “The Art of Racing in the Rain,” and he had read it a few months ago so we had “book club” discussion about it this morning while he was getting my vitals and administering my meds.  For anyone who hasn’t read it, it’s a fantastic book (but be ready for a good cry!)

There is a “healing arts” program here on the unit and they supply patients with art supplies to keep us busy while we are here.  So far I’ve completed some origami cranes (they gave me some origami paper and the instructions) and they also gave me some colored pencils and coloring pages.  Funny how calming & relaxing coloring can be! J  I think when I get outta here I’ll donate some supplies to the program!  I’ve never been an artist but I do have fun with “structured creativity” like scrapbooking, origami, etc.  The program is completely volunteer and I’d certainly not an art therapist, by any means, but I would love to contribute supplies or volunteer some time with them once I’m back on the “outside” J lol

Another fun thing that happens here in the hospital is they play a lullaby everytime a baby is born.  Its really fun to hear that tune go off in the hallway and know that someone is welcoming a sweet baby into their family!  This morning I counted 3 babies in the span of 45 minutes…the labor and delivery unit was hopping!

 

The doc came in this afternoon and said my blood counts are doing exactly what they expected from the high dose chemotherapy & total body radiation I did last week.  My “ANC” (the count they watch the closest) went from 4000-something 2 days ago to 286 yesterday and down to 137 today.  My counts will continue to drop for the next few days (should get down to below 20) which they doc referred to as “zero” and then I’ll hover there for about a week before Kyle’s cells start producing my white blood cells.  So, it looks by the end of next week we’ll see my numbers start to creep back up and know that Ky’s cells have found their cozy home in bones and are starting to churn out my new immune system.  My nurse explained to me that once I trend back up to about 800 that means Kyle’s cells are “engrafting” and that is the first goal.  After that the doc will want to see my “ANC” at or above 1500 for several days in a row before they will consider me ready for discharge.  At this point, I’m hoping that I’m about 1/3 of the way through my hospitalization (barring any complications).  Feeling good & keeping my eye on the prize…home by the end of May!!

-Chellie 

Yesterday's post - Checkpoint Zero

This post was supposed to appear prior to the latest post from Chellie, but did not due to a technical snafu..

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Guest blogger John here again.  Today was THE day.  Day zero in doctor lingo…the really big show if you will.  Chellie received her brother/hero/donor’s stem cells this afternoon between 3:30 and 4pm.  The process was interesting to watch and I am glad I was here to witness it.  My sister Kate flew in from Dallas at around 1pm so I had to pick her up, drive home, drop her off, get Scott, drop him off with Kate, and then rush off to the hospital for Chellie’s transplant procedure.  Fighting rush hour traffic on a Friday afternoon in order to get there in time was a harrowing experience but I made it just in time.  

Chellie’s tiny room was filled with doctors and nurses (5 total at one point) and fun equipment associated with the transplant.  They had a metal basin which was used to thaw out the bags of Kyle’s cells…it looked a lot like a buffet serving vessel. Next to that was the container holding the cryogenically frozen cells.  The container held five 100ml bags, each in its own metal container with extensive labeling to avoid mistakes. As the nurse in charge of defrosting the cells pulled a bag out of the liquid nitrogen, another nurse would read Chellie’s wristband to verify who the recipient was. Then the doctor would read the label on the bag to verify that it was the correct bag for Chellie and all pertinent information associated with that bag…even the expiration date which was in July of 2040. When they thawed the cells in the water bath they only heated the bag enough so that the cells were liquid enough to be transfused into Chellie. Once a bag was thawed, the nurse would hook it to a large syringe that was about 6” long and about the thickness of a bratwurst. The cells went into the syringe and then with the flip of a switch the cells were pushed into a line of Chellies triple hickman. 

Bag after bag the process was repeated until all five bags were in and the process was complete. The cells themselves were still quite cold as they entered her bloodstream.  Chellie did experience some significant nausea early on…not as a result of the cold cells, but from the preservatives used to freeze the cells. Apparently, if Chellie had gotten the cells fresh she would not have been nauseated during the transplant. Luckily they have many anti-nausea meds available and they weren’t afraid to use them. 

As I am typing this Chellie is sleeping peacefully and Kyle’s cells are settling in to the cell nursery that is Chellies bone marrow.  Her brother had the same blood type as Chellie which the doctor said was a good thing because it lessens the chance of a reaction during and after the transplant. Tonight Chellie will be spending a significant amount of time ridding her body of the excess fluid they have been pumping into her but should otherwise have an uneventful evening.  It has been 2 months, 10 days, and 5 hours since we found ourselves on this journey and we have reached yet another checkpoint along the way. We’ll call it checkpoint Zero.

-John

Getting some new ink

I’m aware I’ve been “off the radar” for a while, having other’s blog for me.  Its been a combo of wanting them to be able to share their part of the journey as well as me not feeling totally up to blogging…but I’m back (& better than ever) ;)

 I’ve been trying to take pictures to document everything (radation, transplant, etc)…so I’ll start by catching you guys up on what I’ve been up to this past week.  I had total body radiation 2x/day for 4 days (ending yesterday).  I sat on a bicycle seat and they used these metal alloy lung shields to protect my lungs from getting too much radiation.  I’ve included a picture of the lung protector thingies because I think they are hilarious. 

The physicist here at the hospital actually made the plastic thing that they hang on and they just simply block the radiation.  The radiation techs simply turn off the lights and line my lungs up (via x-ray) with the blocks and they drew all over me to make sure that they had me lined up correctly (another picture with my temporary “back tattoo” J. 

Not an “exact science” at all, but I’m thankful that they are careful and that the physicist here at the hospital is so crafty J lol

Today I’m waiting for John to come to the hospital and visit.  My SIL and MIL are in town taking care of Scott & hanging out at the house which is awesome because it frees John up to come visit at the hospital J

-Chellie

Intermission: Time for a breather and reflection

Guest blog from Rick (Chellie's dad)

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Tuesday I saw something that I would have never hoped for, but something that will be one of those moments in my life I will cherish the most…our two kids bonding in a way that siblings rarely experience. Beyond their joking, camaraderie, and bravado I witnessed a literal and emotional life saving event: Kyle hooked up to that machine donating what will be the life-giving stem cells to provide Chellie with what she calls her “re-birthday”. Kyle humbly downplayed his role but I could see the pride, love, and true pleasure he takes in doing this for his sister. And Chellie has such obvious love and appreciation for what Kyle is doing. She would certainly do the same for him. They have always gotten along and been close, but this display was special for a parent. They drew strength and inspiration from each other. Made me very proud! And I think it gave them both a great lesson in “life” and what life is all about.

So as we patiently wait for the implantation of Kyle’s stem cells into Chellie this Friday evening, it seems like an appropriate time for an “intermission”…in several ways.  For Chellie, John and Scotty, this is literally the end of act one; ‘The Preparation’, and the beginning of act two; ‘The Recovery!’ For Debbie and me it also provides an appropriate and inspirational intermission for life in general.

So about this inspirational intermission.

You’ve heard this before, but it is so true: life is all that “stuff” that happens when you are busy going about your daily activities…and it is this stuff that often provides the best of life! We certainly didn’t see this coming and it has thrown us a curve on many levels, but beyond all that we have had our eyes opened to a few things. We of course “notice and appreciate” nice things in our daily lives. But these past couple of months have led us to this meaningful intermission to refocus and recalibrate our purpose and perspective going forward. We have been overwhelmed by the kindness and generosity of relatives and friends, the courage shown by Chellie and her “boys”, and the love from everyone for Chellie. And we have gained a renewed appreciation for enjoying healthy relationships and good health. It is more than a cliché! Every day we wake up feeling vibrant and healthy is a blessing. Enjoying family is more meaningful. Getting outside and enjoying pain free exercise is a privilege…and it certainly isn’t as easy as it used to be! But that vital, lung filling breath of fresh Rocky Mountain air, especially when enjoyed with someone special, is the best! Thrive on it!!

Science is obviously instrumental in providing Chellie with this new chance at life, but is up to us to embrace it and reach out to live every day to its fullest potential. Being there for Chellie in her time of need is so special for us, and I know she looks forward to a long, healthy life so she can be there for Scotty. That is what life is all about and is exactly what I believe to be the theme of this intermission. Let the recovery begin! 

A Real Life Hero!

Guest Blog Entry from Kyle (the brother/perfect match/hero) J

Thursday - Day 1 - Frontier Airlines sucks! I spend the entire day at work at the pentagram... I mean Pentagon and headed to the airport around 1600. My flight was supposed to leave at 1800 so I had plenty of time. I made it through security (TSA took my toothpaste which was a bummer cuz I had just bought it!)  I was at my gate by 1700, just in time to hear that the flight was delayed 3 hours (BUMMER!). I called the rental car company to let them know I would be late but they said that they had already canceled my car and it would be 50 extra bucks to re-reserve it. (Reminds me of that Seinfeld episode about car rental reservations!) My trip out to Denver was not going so well at this point. I finally got to Denver around 2330 and Chellie came to get me and lent me one of their cars for the week. 

Friday - Day 2 - Got checked into my hotel at around 0045 and hit the rack. I was up at 0400 because that is what my body is used to and I was still on DC time. Needless to say, I was plenty early to my 0800 appointment at the hospital and I got my first set of neupogen injections of without any problems. They did have to give me 900mg so they had to do it with two shots (it wouldn't all fit in one syringe). I didn't get any of the painful side effects that everyone warned me about on the first day, so I was a happy camper. I got to pick Chellie up from the hospital after her surgery that afternoon to install the new 'life lines' and we grabbed a quick bite to eat before I dropped her off for her last night at home as a “sicky”... next time she goes back home she'll be cancer free and my stem cells will be working overtime to churn out a new immune system for her!!!

Saturday - Day 3 - Woke up feeling like someone hit me in the chest with a bat. apparently your breastbone is one of the bones that the neupogen goes to town on! i took my tylenol and it took the edge off and i went in for my second set of shots. As the nurse was getting the medicine ready she had way bigger needles than the day before on the syringes (apparently it is easier to get it ready with the big needle and put the little one on after it is ready). I told her that they used smaller needles yesterday and she just made fun of me and said she likes to use the big ones to make people squirm but then she told me the real reason and put the small needle on and all was well. I went through the day keeping up on my tylenol and i was no worse for the wear.

Sunday - Day 4 - Woke up in the worst pain I had felt in for as long as I can remember. I went in to the hospital & got my shots and the doc gave me a prescription for some stronger pain medicine. They did a throat swab (one thing I like less than shots) and “water boarded” me with saline solution to check to see if I had a sinus infection before I was allowed onto the isolation unit (Chell’s new digs). All the tests came back negative and the new pain meds were awesome!

Monday - Day 5 - Got what I thought were going to be my last set of neupogen injections and went to visit Chellie for a few hours in the morning. We had a good time and we walked half a mile in her hallway (100 feet at a time).  That’s as far as she gets to go…her hospital room and that 100 ft hallway because it is a positive pressure HEPA filtered unit and she’s not allowed to leave, for her protection. I picked my Dad up at the airport around 1700 and we went to John & Chellie’s house to visit John and Scott for a quick hello.  Then we headed back to the hospital to visit Chell and hung out for another hour or so. It was a pretty good day and we had a good time chatting (I was doing well with my new pain medicine).

Tuesday - Day 6 – STEM CELL DONATION DAY! My dad and I headed into the hospital nice and early and got started with the IV.  The nurse got it on the second time and drew some blood to run a few tests before they got started with the actual donation process. Turned out that I needed one more set of neupogen injections to get my counts up to par. Got the injections and they stuck a HUGE needle in my arm and got the party started. My dad bounced back and forth between my room (down the hall & around the corner) and my sisters room and before we knew it I was all done.  All in all it took about 5 hours.  The hospital called two hours later to tell me they got all they needed and I was clear go get on the plane and go home the next day.

Wednesday - Day 7 - Woke up at 0415 and headed to the airport. Thankfully this flight home went without incident and I was back in my own house getting hugs and kisses from my little girls by 1400.

My cells are on ice right now with Transplant Day at the end of the week.  I hope the transplant goes well for Chellie on Friday. I will be sitting on the beach in St Thomas USVI on Friday having a drink for ya & thinking about ya Chell!

PS From Brother-in-law Jim (quit complaining, you can have a PS when it's your blog...) - As a guy who faints at the sight of needles (literally - I have fainted in all sorts of fun places), this post from Kyle really had my emotions high (I was stressed the entire time reading this). When he got to the part about getting hugs and kisses from his girls it really struck me what a truly awesome thing he did this week. Way to go Kyle - you provided the way for Chellie to get those future hugs and kisses from Scotty! Your act of love for your sister is a great inspiration to me. Thank You!

D-4

Happy Monday!  So I finally admitted to the hospital on Saturday morning!  I started my high-dose chemotherapy that evening and had my second dose of high-dose chemotherapy last night.  Luckily I've had no side effects from the chemotherapy thank goodness for good anti-nausea medications.  I have had a few visitors: my friend Mary Anne from CRC, John, and Kyle.  My Dad arrives in Denver tonight and Kyle will bring him to the hospital later tonight after they go out to dinner.  Ky will donate his stem cells tomorrow morning and they will process and count them tomorrow afternoon and then freeze them for me.  I have finished my chemotherapy and today is my rest day.   Tomorrow through Friday I will have my radiation  treatments.  My transplant is scheduled for Friday night.  So that technically makes today D -4: this is how the doctor notates where I am in pre-transplant conditioning..."transplant day -4".

I got my room decorations up and my spirits are still high :). My room here at this hospital is much smaller than my rooms at St. Joseph's Hospital where I did my first two rounds of chemo.  I don't have a view from my small window but at least I can open up my blinds and let the sunshine in.  I try to get out of my room and walk the hall at least 2 to 3 times a day.  I am not allowed to leave this unit because my unit that is HEPA filtered and the outside hallway (beyond the double doors) is not.  The hallway is only about 100 feet long but it feels nice to get out and walk.  There is a sign on the unit that says 58 lengths equals 1 mile so I try to get a mile in each day.  I take my IV pole with me.  This new IV pole is like an IV on steroids... there's two towers because they have to be able to hang so many bags of medications.  

Yesterday at one point I had eight bags hanging on my IV poles... talk about crazy!  I'll include a picture for you see can see how big it is.  I have decorated it with a little wrist rattle that one of my cousins got for Scott when he was little...so I have a little bee on the cross bar of my IV pump that makes me smile. :) 

-Chellie 

An upgraded Hickman

Today's entry is being composed by guest blogger John. Chellie is undergoing an outpatient procedure today to switch out her two port Hickman to a three port Hickman. Apparently putting a splitter on one of the ports is not an option. Although this procedure was to take place this morning, the hospital experienced some scheduling issues which pushed back her surgery to this afternoon. Unfortunately this effectively extended her required fast to nearly twenty hours....not so bad if she had know it was coming. Sadly, she did not plan ahead by having a yummy feast last night and found herself quite as she put it "hangry"...hungry and angry. Hopefully she can remedy the situation this evening when her brother/donor/hero Kyle takes her out to dinner later tonight. If not her awesome husband John picked up a welcome home cupcake from the Church of Cupcakes. If all goes as planned Chellie will admit to the hospital on Saturday to begin a regiment of chemotherapy followed by radiation therapy in preparation for the stem cell transplant. With any luck the hospital will stay on schedule this time.

Chellie's MIL was kind enough to come up to Denver to help out with Scott so that John can take her to the hospital tomorrow. While Chellie gets settled in, John will be watching the Denver nuggets play over at the Pepsi Center in their first playoff game against the Golden State Warriors. He will stop by after the game to check on Chellie and make sure she has everything she needs. The upcoming weeks will be filled with lots of cleaning to prepare the house for Chellie and her compromised immune system. Projects include lawn aeration, sprinkler turn on, deep cleaning of the kitchen, master bath, and master bedroom, air duct cleaning, carpet cleaning, and the cultivation of obsessive compulsive cleaning behaviors in order to prevent potential infections. Much of this will need to take place in the next week or so in order to allow enough time for the dust to settle. Chellie appreciates all thoughts, prayers, and cards but please refrain from sending any flowers or plants as they can harbor molds that are harmful. God bless and have a great weekend
-John

If the tests are legit, must admit...

Yesterday I had no pending hospital admission date and this morning I have two tentative hospital admission dates.  Right now my transplant coordinator is fast & furiously trying to arrange everything for  a Saturday admit.  If for any reason she can’t get me in on Saturday, then Monday is our “back up day”.  I will know more late this afternoon when I go to the office and get some more bloodwork done & meet with my coordinator.  The other news is that Dr. Nash has decided to change up my “pre-transplant conditioning protocol” and instead of doing radiation first, I’ll do chemo first & then radiation.  He thinks that this might help protect my liver a bit more (let my liver process the chemotherapy drugs before they give me radiation which has the potential to harm the liver).   So, as frustrated as I was with Dr. Nash earlier, this delay has resulted in two changes that will hopefully better protect my lungs and my liver so that I have less change of organ damage (which is a great thing since I’m planning to be a “long term” survivor & I’ll need functioning organs for many years to come J

Kyle arrives in Denver tonight & starts his injections tomorrow.  My dad will be coming out this weekend and will be there with Kyle for moral support when he donates on Tuesday.  If everything goes according to plan, I’ll be in the hospital already so I don’t think I’ll be able to be in the room with them when Kyle donates, but maybe my dad can text me some pictures of Kyle hooked up to the apheresis machine J 

My plan today (aside from driving downtown for my doc appt) is to spend most of today doing laundry and getting ready/packing for the hospital (just in case a Saturday admission is possible).  Tomorrow I’ll hang out with Kyle after he’s done with his injection in the morning.   I’m ready to rock & roll…lets get this party started!

-Chellie

On being n of 1

Well, its Wednesday and still no word on when I’ll admit to the hospital for my transplant.  I went downtown yesterday to get measured for my “lung shields” for the total body irradiation.  That was a very interesting process.  Apparently Dr. Nash has decided that he doesn’t want my lungs to get the full dose of radiation, so the techs who measured me will create little metal alloy shields to place on a piece of what looked like plexi-glass that will be between me & the radiation machine.  The radiation techs were really cool and showed me all around the radiation department and the room that I’ll get my treatments in.  Now that I’m getting the “lung shields” I’ll be getting two different types of radiation.  I will still get the type I described last week where they pack a bunch of rice bags around me and I get radiation from each side but now they will replace a few of those treatments with radiation that will be “front & back”.  That is when I’ll have the lung shields and instead of sitting in a chair I sit on a bicycle seat that is in this contraption that looks like one of the radiation techs made in their garage! J lol  Once I get to that part of my treatment I’ll see if the techs will take a picture of me in the bicycle chair so you can see what I mean about it being kinda “pieced together”.

I have a new mantra these days.  I got an email from my best friend (we have known each other since 2^nd grade).  She read the blog about the long term survival rates that Dr. Nash had quoted me.  She does research for a living right now and reminded me that I am an “n=1” and this has never happened to ME before so my chances of long term survival could (and will) be much higher.  (For anyone who doesn’t have a research background, the “n” is the way researchers abbreviate the number of subjects in their study).  My best friend’s words struck very close to home and my new mantra these days has been “I am an n of 1”.  I think I’m going to print it out and post it in my hospital room (when I get to the hospital) J

Today I have another doc appointment (at the insistence of Dr. Nash).  Thankfully I don’t have to drive all the way downtown and instead I get to see a doc here in Aurora.  That’s a nice change of pace! 

In “other news” Scotty is getting much better at eating.  Last night when I fed him I think he managed to get more in his belly than on his bib (which is a first) J  He’s been successful with sweet potato mixed with oatmeal cereal and tonight we’ll try mixing in bananas!  By they way, Jackpot is WAY more interested in Scotty now that there is food involved!  Yesterday Scott spit/blew sweet potato mash on the table and floor at one point and Jackpot was VERY excited to get to help “clean up” the mess J

-Chellie

Are we gonna do this or what?

Well, we are officially in a holding pattern.  Dr. Nash’s nurse called at 10:30 this morning (yep, on a Sunday) and said that he’s concerned about a few more of my tests.  Apparently he wants to see the report and results from the pulmonologist in writing (the phone consult wasn’t good enough apparently).  He is also worried about my elevated ferritin levels and wants me to repeat my EKG.  I’m annoyed to say the least because he’s had all of this information for a week or more and all of a sudden today with less than 24 hrs till hospital admission he’s changing his mind.  I even asked him about my super high ferritin level when I met with him on Thursday for our consult/consent appointment and he told me he wasn’t concerned about it.  UGH.  So now instead of admitting to the hospital tomorrow morning and getting this whole process started, I’m “on-call” for the doc’s office to contact me and get my more urgent appointments and lab work.  The other kinda crummy deal is now I won’t get Kyle’s “fresh cells” and they will freeze them instead (his donation process is still on schedule).  The nurse claims that its not a big deal, and its probably not, but I was really looking forward to Kyle being there when I got his cells (and now it sounds like he’ll be back in VA by the time I get them).  Oh well.

Yesterday John surprised me with a quick overnight trip to Devil’s Thumb Ranch (where we got married).  We had a wonderful dinner at the restaurant that catered our rehearsal dinner and then we checked into our room.  I relaxed by the fireplace in our room for a while and took advantage of the amazing soaking tub.  I was very careful not to get my central line wet J Apparently when John booked our room he had told the reservations clerk a little bit about why we were coming up last minute.  When I got to our room there was a gift there from the DTR staff (John didn’t know anything about it)…a beautiful and SUPER SOFT blanket with a note from them stating they wanted me to have something that reminded me of the ranch and that they hope to welcome us back soon.  I almost cried reading the note…what amazing customer service and thoughtfulness!  Devils Thumb Ranch is amazing.

This afternoon I’m just kicking back and getting packed for the hospital (even though we don’t have a date yet for when I’ll admit).  Could be Tuesday, could be next week…who knows.  I finished burning my CD (mix tape) for radiation and have that ready to go J

-Chellie

Beating the odds

Yesterday was a super challenging day. Thankfully today is much better.  Yesterday on my way to my final appointment with my transplant doc,  I got into a fender bender (my fault).  Thankfully no one was hurt and very minimal damage to the other girl's car and nothing wrong with John's car which I was driving at the time.  I was worried that I was going to be late to my appointment but made it in time just to hear some news that wasn't what I wanted to hear.  My doc said that there was major concern about one of my lung functioning tests that I'd completed as part of my workup.  He explained that the radiation that they are going to use as part of the transplant has potential to damage the lungs and he needs more information about why my score was so low before we proceed so that we can make adjustments as needed.  So, my amazing nurse coordinator got on the phone right then & there and started working on getting me an urgent appointment with a pulmonologist in town to repeat my pulmonary function test and get a chest CT scan.

I hung out at the hospital all day today getting my lung scan, bloodwork and repeating my pulmonary function test.  I met with a pulmonolgist this afternoon and GOOD NEWS:  my tests today were right within the normal limits.  He wasn't able to figure out why I had  had such a low result/value on one of the tests 11 days ago (I was at 60% capacity that day, and today I was at 125% capacity).  Nonetheless, the pulmonologist said that he didn't see any issues and he called Dr. Nash to consult.  Dr. Nash's nurse called me this afternoon & said he's happy with the information now and we can proceed to transplant at planned.  So I will admit to the hospital on Monday at o'dark thirty :)

The other bad news I got yesterday from my doc was that my long term survival expectations following transplant are lower than I'd hoped to hear.  :(  I had really hoped for something above 50% and instead Dr. Nash said he believed it was closer to 30-40%.  I lost it when he left the room and cried a big ol' ugly cry.  My nurse was in there with me and comforted me the best she could.  I've also since talked to John, family members and a few friends.  One of my good friends is a young mom as well and she reminded me that as mom's we do EVERYTHING we can for our kids.  She reminded me that we fight for our kids and that was exactly what I needed to hear.  I will do absolutely everything in my power to make sure I'm around "long term" and I'm one of the 30-40%. As my parents have said before "someone has to be in that percent...might as well be me" :)   My first official Mother's Day may be spent in the hospital and I won't be able to see Scotty, but I plan to be around for many more Mother's Days to come!!!

On a fun/happy note, Scotty has cut his first tooth!  Its about time, I thought for sure my baby was gonna be the "toothless wonder" till he was 16 :) lol  Bottom left chomper is coming in with a vengence.  He doesn't like letting me see it but I sneak a peak everytime I can.  I am so glad that I got to be home for this "first"!  He's also starting to roll over consistently.  I swear, this boy is going to do all sorts of new "firsts" while I'm in the hospital and will have lots of fun new "tricks" when I get home in a month.  We are starting him on solid foods this week.  I am really looking forward to the reports from John as Scotty tries new foods and whether or not he likes them.  If he's anything like me, he'll love peach baby food :)  YUM!

-Chellie 

Ready for launch

Yesterday I had another dose of spinal chemotherapy with Dr. Morris.  He did an excellent job and it didn't hurt one bit!  It was probably the best session of spinal chemo I've received...it was quick, painless and Dr. Morris cracked jokes the entire time :)

After spinal chemo I headed over to my office and hung out with my coworkers for a few hours.  It was SO much fun to see everyone (although 2 of my coworkers were out of the office).  I was able to stay for our weekly team meeting and get caught up on the latest work news.  I honestly haven't laughed that much in several weeks...my coworkers are a total crack up :)  So nice to see everyone and hang out for a while...good times!

Today I have several errands to run (getting ready for hospital admission in 4 days).  Then this afternoon I have my last doc appt with the transplant team before we "do this thing".  Today's appointment is the final consent and my opportunity to ask any last minute questions.  I have my list ready of things that I have been wondering about for the past week or so.  Its getting real and I'm getting nervous but I'm excited at the same time. 

-Chellie 

The Perfect "Mix Tape"

Well, the Denver weather forecasters were wrong again (no surprise, really). :)  My radiation oncology appointment this afternoon at Rose Medical Center went well.  The roads were totally fine and we got there 40 minutes early (we'd left in plenty of time in case the roads were scary).  The doc (Dr. Howell) was very nice and explained everything very well.  She took all of my medical history (I feel like I have repeated this info WAY too frequently recently) :)  Then she did a quick physical and explained the radiation process & what it will be like for me as the patient.  It is reassuring to know what to expect but still makes me nervous that they will be shooting radiation into my body. 

The process for total body irradiation is really interesting.  Dr. Howell explained how it is different than radiation that most cancer patients get.  Instead of a concentrated radiation dose in a particular area of the body which my doc explained is usually just a couple minutes of radiation, I will get 20-40 minutes of radiation but mine will be much more diffuse.  She said that the "radiation machine" (linear accelerator) is on the other side of the room (to dispurse the energy/radiation) and they will pack bags of rice around me to make me as "rectangular" as possible to ensure equal amounts of radiation is absorbed throughout my body.  The rice bag thing cracked me up (in my mind I pictured Dr. Howell and the nurse, Marion, making lots of trips to Costco to buy big bags of rice.  When the radiation tech came in to measure me (so they know how many rice bags they will need) I sheepishly asked her what they did with the rice after radiation treatments (thinking perhaps we collect all of it from the different hospitals & send it to North Korea? :) lol).  The radiation tech was really cool & explained that they just reuse the rice and that its not actually radioactive (although she said she definitely wouldn't eat it).  She told me that they often has "rice spills" in the radiation department and this made me laugh.  I hope I get to have her as one of my techs in the hospital!

The other thing that I thought was funny is that for the total body radiation I'll be down in the basement of the hospital (that is where the linear accelerator is).  This is only 1 of 2 hospitals in the state that has this particular piece of machinery apparently.  The doc explained that because they use a lower dose of radiation over a longer period of time, I'll need to make sure that I use the bathroom before I go downstairs for treatment.  I guess they don't want to have to "unpack me from all the rice bags" once they get me set up.  They also said that I can bring a CD along with me that they will play in the room for me since the treatment takes 40 minutes.  John and I were joking as we walked out to the car that we can't remember the last time we listened to a CD all the way through and that ipods have been the reason for this.  We spent part of the way home discussing what CDs I would take with me (kinda like that game you play when you say what 5 albums you'd take with you if you got stuck on a deserted island).  I think I'll probably be taking some Jason Mraz, Lumineers, Eagles, and a Beatles CD.  Still haven't decided on the other CDs that I will take with me :)   I really wish I could take my ipod and listen to the mix of songs from our wedding/reception but oh well.

Other than the radiation consult this afternoon, I've just been taking it pretty easy.  I've got some serious joint aches going on.  I told the nurse/doc about it today & they thought it was likely a side effect of the Neupogen (darn Neupogen...its so helpful but such crummy side effects).  I was telling John that I feel like a little old lady with arthritis in the mornings.  The aches get better throughout the day and definitely feel better the more I move...so I am trying to do lots of stretching and walking around when I can. 

We got the check in the mail from those of you who generously donated online through the fundraising website.  THANK YOU SO MUCH!  So nice of you all and we are blown away by your generosity.  All of the notes, gifts, calls, emails, etc. are so thoughtful and encouraging.  We WILL absolutely get through this and your donations will be so helpful to pay bills while I'm not able to work, copays for appointments, hospital stays, and medication, as well as gas to & from the hospital for John to visit me while I'm in the hospital for transplant.  :)

-Chellie

Preparations

Had a great visit from Kyle these past 2 days.  He flew into Denver yesterday and stayed with us last night.  Scotty got to meet Uncle Kyle for the first time and we enjoyed watching a movie together.  This morning Kyle went and completed his physical.  10 vials of blood, and EKG and a chest x-ray.  Then he met with a doctor at CBCI this afternoon.  My guess is that he is one of  THE healthiest donors they have ever met with :)  I am one lucky sister and recipient of his stem cells!

We have a MAJOR winter storm moving into Denver tonight so Kyle decided to return his rental car this afternoon and I drove him to his hotel (they have a shuttle to the airport) and he will try and leave early before any of the weather interferes with the flights.  Kyle and I went out to dinner together tonight and enjoyed some "sibling time" :)  Very good to see him and looking forward to seeing him again (he promised he'd come visit me in the hospital after his injections each day when he comes back out for the stem cell donation :)

I got 2 calls from the radiation oncologist's office today confirming my appointment tomorrow @ 1pm.  I hope we can make it downtown in the blizzard conditions that they are predicting (weather forecasters here in Denver are famous for being not-so-accurate with their forecasts.  We'll see how it looks tomorrow morning. :)  John has volunteered to drive me to my appointment so that I don't have to worry about that on top of meeting with the radiation oncologist.  I have to be honest, I am really nervous about the radiation therapy that is part of the pre-transplant process.  I am sure it will be fine but it freaks me out to expose my body to the radiation because it is associated with developing secondary cancers later on.  Just taking it one step at a time for now.

MIL, Judy, is here this week helping care for Scotty while our daycare lady is on vacation.  It is so nice to have here here taking care of the little munchkin so that I can focus on the rest of my appointments and resting up before I head back to the hospital next week :)

-Chellie

Going dancing

Wow it has been a BUSY week.  I got all 12 of my appointments completed.  This morning I met with my nurse coordinator, a social worker, and a psychologist for my pre-transplant psych eval.  (Aced it)...just kidding.  I think it threw the psychologist off a bit when she asked me my highest level of education and I told her. (Apparently she hadn't looked at any of my paperwork in my chart and had just rushed over from the hospital to meet with me).  She was without her usual forms and was just doing her eval from memory but having another clinician in the room with her, she seemed a little rattled and kept apologizing for looking unprepared.  No judgment from me...I have shown up a few times to do an intake and not had the right form...ya just make do (when ya do it everyday ya pretty much know the form by heart) :). She was super nice and has a baby just a month older than Scotty so we had a good connection and built rapport around that :)

Met with my oncologist, Dr.  Liel, this morning and she said that my bone marrow biopsy results from Wednesday looked ok.  I have a few blasts (premature cells) in my marrow, but she does not think are leukemia cells and she thinks they are related to my marrow regenerating itself after my last round of chemo.  The spinal chemo that I did earlier this week showed a scary cell (just one) in my CSF, so Dr. Nash (my transplant doc) wants me to do another spinal chemo next week (to check my CSF again and to also give me another dose of medicine just in case, to knockout any other "cells that might be hiding in there."). In addition to spinal chemo next week I also have my consult with the radiation oncologist about my total body radiation and "consent" (final appt) with Dr. Nash before I admit to the hospital for transplant.

I got my calendar today from the transplant team.  I will admit to the hospital on Monday the 15th early in the morning.  I have to get a new central line placed because I currently have a "double Hickman" and I need a "triple Hickman" for transplant.  Unfortunately it's not something they can just add to the one I already have, so that means another surgery to remove my current one and place the triple Hickman.  Bummer, but I want them to have exactly what they need to get the job done! :).   I will have total body radiation treatment 2x/day starting on the 16th and ending on the 19th.  On the 20th and 21st I will get SUPER high dose chemotherapy.  Then I get a "rest day" from chemo on the 22nd (but I start my anti rejection meds) and on the 23rd I will get Kyle's stem cells.   The days and weeks following the transplant will be some more chemo, anti rejection meds and more spinal chemo.  And then we wait... :)

It is SO exciting that we have a calendar and a plan!  I can't believe that exactly 2 months after my initial diagnosis I will be admitting to the hospital for my transplant.  The folks at Kaiser and CBCI have been  awesome with getting things moving and coordinated so quickly!!  Things have gone so smoothly so far with my counts, Kyle being my perfect match, and minimal side effects from chemo.  Thank you for all of your prayers so far and as we move forward in the transplant process.  The support we have and continue to receive from family, friends, and coworkers is absolutely AMAZING!  You all have made this so much easier to get through so far.  Now it's time for the "big dance". :)

-Chellie

Appoinments

So, as of today I have 7/12 of my weekly appointments completed.  This morning my Dad drove me downtown to the Kaiser Franklin building for my bone marrow biopsy.  We got there early as my nurse said she'd have medication ready for me.  We got there early and after waiting 45 minutes I had to ask someone to figure out what the holdup was.  They quickly found the medicine and about half an hour after it was administered  they walked me back to the bone marrow biopsy room.  I feel like I've been to this room way too much.  3 bone marrow biopsies in the past 6 weeks!  (Definitely NOT my idea of fun).  My Dad wad there to hold my hand throughout the biopsy and a nursing student observed as part of her clinicals (hey, if I'm in pain someone might as well learn something from it) :). I am back home and still sore, but SUPER glad that it is over!! The rest of my appointments this week will be a piece of cake.  I have spinal chemo super early tomorrow, 2 regular oncology apps with blood work, a dentist appt, and an EKG. 

My Dad left to go back to Pagosa Springs this afternoon but my mom is here to help out with Scotty all week.  It's nice to have her back here helping with Scott and household chores and Scotty really seems to enjoy his time with her (as does Jackpot because he gets to go on LONG walks with her when she is trying to increase steps on her pedometer! :)

Not much else going on this week.  I have been spending LOTS of time in the car driving all around the metro area.  Hoping to have some more health updates and news after my appt with my oncologist on Friday. 

-Chellie 

I love it when a plan comes together

Whew, I accomplished 1/3 of my pre-transplant appointments today!  It was a very busy day driving all over town!  I had to go all the way to Good Samaritan Hospital(about an hr north of home) for my pulmonary function test, but its done and the respiratory tech who did all my tests was awesome and explained everything and my results as we went.  I also got my sinus CT, blood work (9 vials of blood) and my chest x-ray checked off the list :). Tomorrow is my echocardiogram in downtown Denver and the caregiver class @ the transplant center with John and my mom.  The only thing I still need to schedule is the bone marrow biopsy (my oncology office is having a hard time getting main this week and we may need to drive up to Good Samaritan again since they have availability on Wed.)

I talked to my transplant coordinator this afternoon and we have a tentative schedule! Kyle will be coming out early next week to do his physical.  It looks as though I will admit to Presbyterian St. Luke's Hospital's transplant unit on April 15.  Kyle will come out again after I am in the hospital and start his injections to increase his stem cell production on the 19th with the actual transplant happening on April 23!!!  They will harvest Kyle's stem cells on the morning of the 23rd and infuse/transplant them into me that night.  It sounds as though I will be in the hospital for one week prior to the transplant for the super intense chemotherapy and total body radiation and then three weeks after the transplant while we wait for the stem cells to engraft into my bone marrow.

If all goes according to plan it looks as though April 23 will be my new "re-birthday" :)  I think its absolutely awesome that this will happen during the springtime and that all of this is happening now, so close to Easter, as it is the time of renewal and life.  God has been watching out for me and keeps me in the comfort of his arms. 

My parents are in town this week helping watch Scotty (his daycare provider just became a new grandma and is going to help out with her brand new granddaughter :). Next week we will have Kyle here insisting while he completes his physical and my MIL will be here all week to watch Scott until daycare opens back up the week of the 15th.

-Chellie 

Friday's Post - Appointments

My apologies to all for not getting this up on Friday. Chellie may be looking to replace me as the guy in charge of the blog... Hope everyone had a Happy Easter. - jdv

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TGIF.  I had blood work done this morning and my numbers are trending up, exactly as we had hoped!  I am I longer neuropenic (yay) but I still need to get lots of rest and hydrate well with lots of water (my bloodwork today showed that I am slightly dehydrated) and I don't want to have to go to the ER for IV fluids this weekend...so I will have my water bottle in hand all weekend long! :)

As I was leaving the clinic this afternoon I was thinking to myself...wow, I don't have another medical appointment till Thursday next week.  That was, until my phone rang @ 3:30pm.  It was the Kaiser transplant coordinator.  She had good news for me in that they think we will be able to move forward with the transplant rather quickly (possibly by mid to late April).  BUT, that means I have to get 12 appointments scheduled and completed next week!!!!  Blood work, a chest x-ray, pulmonary function test, echocardiogram, an EKG, CT scan of my sinuses, another bone marrow biopsy, another  dose of spinal chemo, a dental clearance (with a full set of X-rays), as well as my regular oncology lab work w/ possible transfusion, a transplant caregiver class (which my mom and John will need to attend with me) and my regular weekly appt. with Dr. Liel.  HOLY MOLY that is a lot of appointments!  And of course they are all at different clinics and hospitals around the metro area. :). It looks as though I will probably be in the car and doctor's offices more than I am at home next week! Lol

The good news is that I was able to get 9 of the appointments scheduled before the offices closed this afternoon.  Still waiting on one of the hospitals to call me back to schedule the pulmonary function test and my oncologist's office needs to schedule the bone marrow biopsy and the spinal chemo.  I must say that I am not thrilled about another bone marrow biopsy since I just did one 2 weeks ago, but its a means to an end.  If all goes according to plan, I will have my transplant late April!!  That is way ahead of schedule and means I get to skip 2 additional rounds of chemo!  WOO HOO!

It was indeed a "Good Friday" for me today.  We are hoping that the transplant office will be able to get Kyle in for his part of the physical on either Wed next week or the following Monday!  (Prayers that we can get all the scheduling worked out in a timely manner for Kyle & myself would greatly be appreciated so that we can go straight to transplant mid-late April).  :)  

-Chellie