Transplant Protocol

Yesterday we met the nice folks at the Colorado Blood Cancer Institute (CBCI).  I had my initial consultation with Dr. Nash and my bone marrow transplant coordinator, Kallee.  Once my oncologist, Dr. Liel, gets me to remission with these first rounds of chemotherapy, then she’ll transfer my care from Kaiser’s oncology department over to the folks at CBCI for the transplant process.  The appointment yesterday was my official “meet & greet”, initial physical, consult & they drew my blood and swabbed my cheek to start my “typing”.  They also Fed-Ex’d a “sibling kit” to my brother, Kyle, so that we can type him and see if he’s my match J  We should know if Ky’s my match in about 2 weeks (fingers crossed)!!

It feels good that this typing process is underway.  We learned SO much from the transplant coordinator yesterday (it was seriously like trying to drink from a fire hose)!  My mom was with me and took TONS of notes (thanks Mom!) and we got all of our questions answered, but man I was emotionally and mentally exhausted after listening and learning so much about the process. Totally cool information to learn about though! We walked out of there with binders (literally) full of information that my caregiver will need to know, a big packet of forms for me to go through, and much more. 

Key points:  Once we find my match (hopefully in the next 2 months or so) I will go into the hospital for about 3 weeks, undergo another round of chemo to kill off all my blood cells & then receive my stem-cell transplant.   The transplant team requires that I have a full-time (24/7) dedicated caregiver for the first 100 days out of the hospital (holy cow!).  We are REALLY hoping that everything will go according to plan and that my transplant can happen over the summertime so that my mom can be here to help out since she’ll be off from school at that time! Essentially I will need someone to clean, cook, drive me to appointments almost everyday of the week (thank goodness for moms!)   I’m thinking that I’m going to have to really learn how to give up control with this stuff, which will be quite a lesson because I SO enjoy being independent!  Another thing I found interesting is that CBCI requires that patients live within 20 miles of the transplant center (because of the frequency of which I’ll be visiting them).  Thankfully we live within the 20 mile radius (yay for being close to the “big city”) J lol.  This means that I should be able to do most of my recovery at home (otherwise, they require that you stay in a hotel within 20 miles!) This is a serious commitment!  I’m assuming that I’ll have to sign some sort of patient contract with CBCI at some point before my actual transplant…I wonder if I should sign it in blood J lol 

-Chellie

The merits of flexibility

Flexibility has become the new motto around here.  Pre-leukemia you could ask John about my obsessive nature to plan everything, make lists, etc and he probably would have laughed but agreed that it was a bit neurotic. (I still think its helpful, someone’s gotta keep the chaos organized!)  Now-a-days that is kinda out the window.  I/we have to be fluid and flexible with everything.  For instance, the docs at the Colorado Blood Cancer Institute just called a few minutes ago and want to squeeze me in for my first appointment this afternoon @ 3:00pm.  So, we get to drive downtown (again) this afternoon to meet these nice folks (skipping the other errands we had planned today since it was supposed to be a “rest” day).  I also spent time on the phone this morning with Southwest Airlines rebooking my mom’s flight so we can get her back to CA tomorrow night (avoiding her possibly getting stuck here in Denver due to the storm that’s coming in on Saturday).   Good thing we have options and opportunities to be flexible all while trying to organize schedules, run errands, etc.

Not sure what the appointment at CBCI is really for…I’m guessing that it’s my initial consultation and possibly to start the HLA typing for my bone marrow match.  We’ll see.  I’ll update ya tomorrow while I’m waiting at the Kaiser infusion clinic for my probable blood transfusion (man, these medical appointments are like a full time job)! lol 

-Chellie

The Waiting Game

No transfusion today.  My mom and I packed up our bags this morning, ready to spend the day at the Kaiser infusion clinic just to find out that my numbers hadn’t changed that much and Dr. Liel didn’t think that I needed a transfusion today (probably Friday, or “so she claims”) J I am still anemic but not to the point of needing a transfusion (yet). I am definitely more tired, but Dr. Liel didn’t think that it was related to the anemia and more likely related to the “massive amounts of chemo over the past two weeks” (her words, not mine) lol.  So, we go back on Friday (with our bags packed again) and we’ll see what happens.  Dr. Liel has told me in the past that they like to make sure patients can “get through the weekends” without transfusions, so I’m assuming that I’ll get mine on Friday to ward off any possible problems over the coming weekend.  Then again, who knows…maybe by that time my numbers will start bouncing back up (its such a fluid process that I’m starting to realize ya just prepare for the long haul & skip out happily if they let ya go early) J

Still feeling good…again, just tired.  I think the chemotherapy side effects are starting to creep up on me a bit, but nothing that isn’t manageable with an extra nap or two each day J  Luckily my mom is still here to help out this week and Scotty goes to our awesome daycare provider each day (the consistency and routine makes life much easier for me).  My mom will return to CA on Saturday (looks like she’ll get outta Denver just before we have our next snow storm hit)!  Planning on another bone marrow biopsy sometime next week (to check numbers again) and then once we get that back we start planning for the next hospitalization (phase B of this first round of chemo).

Since I got done early at the infusion clinic today I was able to stop by my office this afternoon, make copies of some paperwork for HR and introduce my mom to all of my coworkers and my boss.  It was SO good to see familiar faces (love you guys!) and my mom commented on how sweet and awesome you guys are!   I think she realizes now why I love my job and especially my team/coworkers/friends so much! J  

-Chellie

Home Sweet Home

Wonderful news…still at home! J  Keep those prayers coming, I can feel them working and have been feeling well (no fevers)!  I am tired (reminds me of the fatigue I had in my first trimester with Scotty), and I have my first “mouth sore” related to the chemo (which means no acidic or spicy foods) but other than adding a nap or two to my routine and making sure to rinse my mouth with baking soda and water every few hours, not biggie/  Still SO good to be home with my boys and my mom!!  Not much compares to being able to nap on your own couch and snuggle with my boys in the evening when everyone gets home from work/daycare!

I had an outpatient appointment at the Kaiser oncology office yesterday and they said that my counts were just at the threshold for a red blood cell transfusion but since I was feeling good (no shortness of breath or major fatigue) they let me go yesterday and said to expect a transfusion when I come in tomorrow.  So, my mom will go with me to my outpatient appt tomorrow and we’ll hang out for 4-5 hrs for a red blood cell transfusion.  My mom will be knitting and I’m planning to take my hole punch, recipe binder that I got from my “foodie friend” Pauline (the one who taught me to make homemade bagels & challah bread) and tomorrow I’ll spend my afternoon organizing my recipes while I get my transfusion.  My mom has been making all of our favorite dinners and stocking our freezer so that when she goes back to CA this weekend we are all stocked up J

Still neutropenic so that means my mom has been running all of my errands for me.  I drive (feels good to get out of the house) but I’m not allowed to be “in public” so I stay in the car and send her in to Target, Sprouts, the Post Office, Walgreens, etc.  I just sit in the car & read magazines...pretty sweet deal if you ask me J  lol

Hoping that my counts start to bounce back here soon so that we can “stay on track” for Phase B of this first round of chemo.  If my counts come back up as the doctor hopes, then I’ll likely readmit to the hospital midweek next week for Phase B which hopefully will be a 5 day hospitalization & then back home again if all goes according to plan.  I really just want to stay on track so we can get this ball rolling, find out that I’m in remission & keep moving forward with the plan.  One step at a time, but I’ve got hope that this will all be behind us by the end of the summer and that we can celebrate with a trip down to my parents cabin in Pagosa for a nice relaxing Labor Day weekend come September!

-Chellie

The Chemo Cut!

I did it!  I am officially rocking the shaved head look.  NEVER in my wildest dreams did I think that I’d ever have any reason or desire to shave my head (I loved my red hair!!).  It wasn’t nearly as traumatic as I thought (I did shed a tear but it was more for the reason that now I “look” like a cancer patient…even though (aside from the fatigue), I still don’t feel like one)!  My buzz cut reminds me of my brother, Kyle’s, buzz cuts back in the 80’s and how soft they are when you rub them.  We cut off all my dyed red color and I’m back to my “natural” color which I haven’t seen since I was 16 J lol.  Kristi warned me that even this fuzz will still start to fall out and eventually I’ll be totally bald, but at least it will just be little baby fuzz that falls out & not long locks that I find on my pillowcase and in the shower in the morning!  Being the amazing and super supportive husband that he is, John also shaved his head.  We are a family of baldies now! lol

Sporting the Voss Family haircut

My ahhh-mazing cousin Kristi (who is a breast-cancer survivor and also happens to be a super talented hairstylist) came over to give me my “chemo cut” this afternoon.  She brought pictures with her of when she & her sister cut their hair 3 years ago right after she started her chemo and it was nice to look through them & see their emotions right before “going under the clippers” myself J  It was SUPER meaningful that Kristi was the one to do this for me.  Couldn’t ask for a better experience.  THANK YOU KRISTI, you are a rockstar and I LOVE YA!

The Chemo Cut

I’m including some pictures of our “chemo cut” party.  We got to do it in the comfort of my own home (so much better than going to a salon or having it done while in the hospital).  Kristi brought balloons, everyone had a beer (except me) and we made it a party J  I am feeling good still (no fevers) and aside from being tired, no complaints.  Its SO good to be home!!!!

-Chellie

Freedom!

Today’s entry is short & sweet.  I’M GOING HOME!!!!  The discharge orders are in the computer and I’m waiting for the pharmacy downstairs to process all 8 of my scripts (yes, 8!!) so we can pick them up before heading home.  

I can’t wait to get home, hold my son, pet my dog, sleep in my own bed, and take a walk outside in our neighborhood.  Aside from walking in the neighborhood, if I go out in public (grocery store, etc.) I’ll have to sport my “Michael Jackson” mask since I’m still immunocompromised.  I’ve been daydreaming about wandering the aisles at Costco (funny how a routine chore sounds so fun now), but Dr. Liel said that I shouldn’t really be going out to do things like that L So for now, John and my mom will run all of our errands (while I stay home and snuggle with Scotty).  Sounds like a pretty sweet deal to me J lol 

Hopefully I will get to stay home this entire week.  If I spike a fever (which for me is 100.3) I have to come back to the emergency room and readmit.  Please send prayers that I will be able to remain at home all week and not come back to the hospital until my doc says I’m ready for Phase B of chemo!

-Chellie

Easy as 1, 2, 3...

My mom mentioned to me today that many of you guys are asking her how to get tested to see if you might be my match (or what I’m referring to as my “bone marrow angel” J).  Since I can’t think of anything interesting to write about today (hospital life is getting pretty routine) I figured I’d talk about this today J

Step 1 – Go to http://marrow.org/Join/Join_Now/Join_Now.aspx

Step 2 – You can register online through the website.  At the bottom of the website there are 4 “qualification” questions to make sure that you eligible to register.  They want to make sure you are 1) in good health, 2) understand the commitment, 3) and live in the US.  For anyone who is not sure if they would qualify due to medical issues, here is a link http://marrow.org/Join/Medical_Guidelines/Medical_Guidelines_for_Joining_the_Registry.aspx that answers most questions about health related issues and whether or not you are eligible to be a donor.  The other important link to view is http://marrow.org/Join/Your_Commitment.aspx  which outlines the responsibilities of being a donor and what it entails.  (Remember, if you register to be a donor you are then listed on the national registry… you might not be my match but you could absolutely be someone else’s match and save their life!)

Step 3 – One you’ve looked through everything and want to move forward you check all the boxes and it will take you to the “Online Registration Form”.  It will walk you through the online registration (race/ethnicity questions, health “clearance” questions, contact information, etc).  After that it will step you through requesting a testing kit online.  The kit is a simple cheek swab and they will mail it to you at home, you follow the directions and mail it back to them per the instructions in the kit.  Easy Peasy! J

Here’s a link to Frequently Asked Questions about bone marrow donation:  http://marrow.org/Join/FAQs_about_Joining.aspx or if you still have questions you can call them at 1-800-MARROW2 (800-627-7692). 

Dr. Liel came in after rounds this morning and said the plan is still to discharge home tomorrow after a dose of chemotherapy (pending good counts and no fevers which I am referring to as “no whammies”).  I am SO excited to bust outta this joint and am keeping my fingers (and toes) crossed that everything goes according to plan.  If so, I’ll get to be home for a week before I readmit to the hospital for another round chemotherapy (probably a week long hospitalization).  In preparation for discharge tomorrow my nurse taught me how to “flush” my central line today.  It is kind of intimidating (but totally doable) and I’m glad my mom was here to watch & take notes so that when I do it at home next week (3 times per day) we have another person’s knowledge.  The doc said they could send a home healthcare nurse to our house to do it for me.  For those of you who know me well, you know how independent I like to be and this is one of those things that I want to know how to do myself. J  This is my opportunity to play “medical professional” since I took a detour in college and changed majors from pre-med to psych J  In addition to flushing my central line I’ll also learn how to give myself injections (to help boost white blood cell production) and I’ll be getting myself a fancy pill box to make sure I take all my medications accurately.  Just keeping on top of my meds, injections, appointments, central line care, etc. is gonna be like having a full-time job!