Just a little off the top please...

Round 2 of ‘spinal chemo’ is done.  My friend Kalli was visiting me in the hospital when the doc finally showed up (@ 5:45pm) to perform the procedure last night.  She was nice enough to stay and distract me while the doc did his job.  (Thanks Kalli!) J

Today is another “rest” day.  No IVs, no chemo…just hanging out in the hospital.  My parents will be here to visit in a bit and John will visit tonight after work.  My mom will watch Scotty tonight so that John and I can have dinner together for the first time in nearly 2 weeks!  (I’m excited for “date night” even if its here in my hospital room J  My “counts” are still low (neutropenic) but we are hoping to see some increase in the next few days (still hoping for discharge on Saturday).  If I get to go home on Saturday as planned then I’ll have outpatient appointments at the Kaiser oncology/hematology office downtown (to get labs done & possible transfusions) 3 times next week.  My cousin Kristi will be coming over on Sunday to give me my “chemo haircut”.  I’ve decided to shave my head since my doc says that if I don’t my hair will fall out in big clumps starting somewhere around Day 14 (mid next-week).  I think seeing my hair fall out would be way too traumatic so we’ll have some fun (perhaps I’ll rock a mohawk for a few minutes before we shave it off entirely).  Don’t worry, we’ll have my mom take pictures and post them on the blog J

While on a walk around the unit today I found a little bulletin board that had some forms I could fill out (recognizing excellent nurses/staff).  I am looking forward to writing up a few cards for my favorite nurses (Ann, Nicole, Amanda & Sally) this afternoon while I watch Ellen on tv.  J

I’m including a picture of my view from my hospital room for those of you who are curious.  I love that I have a view of the mountains!!!  Those snow capped mountains are the reason I love living in Denver and they make my heart sing!  

-Chellie

Freedom

I’ve been able to spend the last 24 hrs without being plugged into anything!  Its amazing how much better I sleep without an IV line getting tangled in the covers J.  I still have my central line but the docs were nice enough to stop the fluids for a while to give me time to “rest”.  When they finally unhooked me from the IV pole (my hospital dog) I immediately thought about of that Southwest Airlines slogan, “Ding, you are now free to move about the country”.  I am doing my walks on the unit sans IV pole for now which is awesome.  I am still not allowed to leave the 10^th floor which is a bummer (believe, me I’m tempted just to hop on the elevator and take a “joy ride” to another floor just to push the limits).  J

Today is “spinal chemo” day.  It sounds bad kinda scary but it really isn’t that bad.  For those of you who have had an epidural it’s a very similar process in how they access the spinal area (with the local numbing meds that feel like bee stings).  The doc will take out some of my spinal fluid and replace it with the same volume of chemotherapy so that there is no difference in the volume/pressure once the procedure is done (if there is a difference at the end it can cause a spinal headache).     All of these procedures are starting to add up and makes me think that next time I have to fill out a medical history questionnaire I’m gonna have all sorts of “impressive” stuff to list from the past 20 years (burst appendix, failed labor induction resulting in a c-section after 3 days in the hospital trying to have Scott, bone marrow biopsy, spinal taps.)  Not much else that they could throw at me that sounds too daunting at this point J 

My parents are flying in to visit today.  It will be awesome to see my dad and reassuring to know my mom is here to help John take care of Scott for the next 2 weeks.  This morning I had a discussion with my oncologist & she really felt that I should stay in the hospital till Saturday (due to my blood work & risk for infection outside the hospital).  I tried to explain to her that its not like I’m gonna take off to Mexico or anything if they discharge me, but I understand her concerns about going home too quickly (don’t want to just turn around and have to re-admit to the hospital which would most likely be the case).  So, I’m here till Saturday (get another dose of chemotherapy then) and hoping to discharge home this weekend.  

-Chellie

Easiest way to change your bloodtype

Yesterday was a good day.  I had one of my favorite nurses, Nicole.  She’s a goofball (in the best way).  I got 2 units of blood transfused and there were many vampire/Twilight jokes floating around my room J  John was able to come visit for a few hours and I got to chat on the phone with several friends/family.  Your phone calls, texts, emails and facebook messages totally brighten my days! 

I met with the new oncologist, Dr. Liel, today (Kaiser oncologists round for a week at a time).  My new doc is short in stature, but I have no doubt that she gets things done (she strikes me as a little powerhouse).  Today we talked about the “game plan” for the pending bone marrow transplant.  She is starting the conversation with the Colorado Blood Cancer Institute docs so that we can begin the process of testing my blood and looking for a match.  The testing is called “HLA typing” and it is done via a cheek swab or a blood test.  We talked about how my brother, Kyle, is my best chance at being a match (biological siblings have about a 25-30% chance of matching).  Kyle and I will both have our blood typed and (fingers crossed) we’ll be all set to move forward with the bone marrow donation process.  However, if Kyle isn’t a match then my docs will move to the National Bone Marrow Registry to see if we can find a match there (about a 40% chance of finding a match this way).   

For anyone who is interested in getting tested to see if you might be a match for me (or anyone really), its EASY.  You can go to:  http://marrow.org/Join/Join_the_Registry.aspx  And as totally cliché as this sounds, you can ABSOLUTELY make a difference and save a life. 

Fun facts I’ve learned about my pending bone marrow transplant:

1.      I will potentially have a different blood type once I get my donor’s marrow/cells.  (That strikes me as totally nuts that I could have a different blood type than the one I was born with!)

2.      I will likely get my donor’s allergies.  Sure hope my donor isn’t allergic to peaches, dogs, wine or chocolate J lol - Chellie

Neutropenia

This morning when I woke up my nurse told me I’d reached “neutropenia.”  Kinda sounds like a magical land or a ride at Disneyland or something J lol.  In reality, it means that the chemotherapy is working just as we’d hoped and it has officially killed off my white blood cells to the point that I’m at a much higher risk for infection.   Essentially I have no immune system and any little thing could make me sick.  As a result, they had to take the flowers out of my room (only bummer about being neutropenic is that flowers are not allowed), but if being neutropenic means that we are making progress then they can have my flowers J  All my flowers are out at the nurses station now and even more people can enjoy them!

Now that I’m neutropenic I have to wear a mask when I leave my room, visitors must wear a mask if they have any sign of illness, and I just have to be super careful with hand washing/etc.  My nurse brought me in my very own blood pressure cuff this morning when she came in to take my vitals (no more sharing with other patients now that I’m neutropenic) and we were joking around that next time she comes in to take my vitals she’s gonna find it all “bedazzled” J 

In addition to waking up in the “land of neutropenia”, I’m also getting my first blood transfusion today.  The doctor came in and went over all of the consents and talked to me about all the risks. Maybe I should be taking this more seriously, but my thought was “dude, the blood is WAY more natural than all the other stuff (chemo)  we’ve put in my body over the past 4 days”…no big deal!  I must admit that it is a bit weird to think that I’m the recipient of blood products instead of being the donor.  I’ve been a blood donor since college and I guess I always thought it was really no big deal to donate.  It never hurt me and was “easy”.  Today the tables have turned and I am SO grateful for the donors who took the time out of their day to donate the 2 units of blood that I’ll be receiving.  The simple act of blood donation has taken on a whole new meaning for me.  It is truly the gift of life. 

I have had several friends and family ask if they can give blood for me or register to be a bone marrow donor.  While I probably won’t be the direct recipient of your donation, your donation or registration WILL help others (either by replenishing the blood bank supply or matching another person).    Being on the “other side” of the donation now, I can tell you that your donation ABSOLUTLEY makes a difference!    If you are interested in donating blood you can contact your local blood bank.   I’ve also included this link http://www.redcrossblood.org/learn-about-blood/blood-facts-and-statistics  for anyone who is interested.   (Fun facts and stats about blood donation & use J). 

*Tomorrow’s blog topic will be bone marrow donation/registration.  I’ve been learning ALL sorts of really cool information about bone marrow typing/matching and I can’t wait to share it with you all J

Love, Chellie  

Snow Day...

It’s a winter wonderland outside here in Denver today.  We’ve been under a blizzard warning all day and according to the news, we’ve received about 9 inches of snow.  Days like today are some of my favorite.  Normally I’d be home with my boys (John, Scott & Jackpot) and I probably would have done some baking.  Instead I’ve been hanging out with the amazing oncology nurses here at St. Joes Hospital.  Despite the crazy weather outside and not knowing whether or not they will be getting to go home at the end of their shift (due to road conditions & whether the next shift of nurses will be able to make it in to the hospital) they remain upbeat.  I have had my fair share of dealing with different types of nurses.  I work with ER nurses on a daily basis at work, psych nurses, and when we had Scott here at this same hospital we had several lovely Labor and Deliver nurses, but I can honestly say, Oncology nurses ROCK!  They are truly a different breed.  Every single nurse and CNA that I have had contact with here on the oncology floor over the past week has been absolutely incredible.  They are genuine, caring, upbeat, and funny!  I believe they are angels here on earth!

Today I finished my “Hawaiian Punch” bag of red chemo.  My nurse, Grace, took this last bag of chemo down from my IV pole this morning!  So, Phase A of “Round 1” is done.  J  It makes it sound like a ‘boxing match’ with different “rounds” but I’ve got lots of fight still and I’m ready to keep going. (Ding Ding).  I am still so thankful that I haven’t had any of the nausea/vomiting side effects (thank goodness for Zofran).  My team has been awesome to make sure that I’ve been “pre-medicated” to ward off as many side effects as possible.  Today the fatigue has started to hit harder, and I admit that I’m really starting to feel tired.  The beauty about today is that even if I was home and not here in the hospital, I’d have likely been curled up on the couch and enjoying the snow and stayed inside.  Instead, I rested in my room and got to see how quiet downtown gets when the snow shuts it down.   I miss my boys at home, but I know they are doing just fine (they have a serious bachelor pad thing going on right now and it makes me giggle thinking about how things might be looking at the house right about now) J lol. 

My docs say that my “counts” continue to look like they expect and that in the next 3 day we should see my body really start to react to the chemotherapy.  My red blood cells are still just hanging above the threshold for a transfusion but the doc said that we’ll likely schedule a transfusion in the next 2 days because they don’t want them to drop too low.  Tomorrow I’ll start a new medication (an injection) that should help my white blood cell production as it tries to rebound from the chemotherapy agents.  

-Chellie

V and D?

Today’s blog is brought to you by the letters V & D. (Reminds me of Sesame Street) J  Today I am getting my last 2 chemo infusions of “Phase A”.  The chemo drug that starts with V was administered via a “push” meaning my nurse injected it into my central line over a period of 10 minutes this morning.  I must admit that I was pretty anxious this morning, worried about how I’d react to the new chemo medication and I even considered taking the PRN anxiety medication that the doctors ordered but I decided against it and just to see what happened.  Low & behold, that medication “push” went just fine and I haven’t experienced any nausea or anything that I’d been worried about with it.  My 2^nd infusion for today is still going on.  It’s the “D” in “hyperCVAD” and is a big IV bag full of red juice that looks like Hawaiian Punch or Kool-Aid.  I must admit that it is very strange to see red “juice” coming through my IV and into my central line, but hey…if this is the stuff that’s gonna wipe out the rest of the cancer cells then lets get it where it needs to go and let it do its work! J

This blog update is being submitted later than the ones I have done in the past few days and I am starting to feel more tired but the true reason this update is late is because I got to enjoy time with 2 visitors today.  I had the opportunity to catch up with a friend who came to visit this morning and then I got a good quality visit with John this afternoon.  The opportunity that this current situation has given me to have open/frank conversations with my soul mate is beyond amazing.  Of course, the details of our conversation today are private and only for John and myself, but I am feeling so incredibly blessed and it just reinforces my belief that I married the PERFECT man for me!!!  (Took us long enough to find one another, but our conversation today just reinforced to me that it was worth the wait) J  Our relatively young marriage/relationship is already growing in amazing ways that we’d never expected… all because of this crazy turn of events that started a week ago.  This is a tremendous growth opportunity for our little family.  We are strong and have so much love and support.  I am so proud of John and have all the confidence in the world that he is taking amazing care of our son while I’m not able to do so.  We are gonna come out of this with an even tighter bond and relationship with one another.  I know it sounds like such a cliché thing to say, but I feel like the luckiest woman in the world today!!

Health update:  my labs this morning showed that my “counts” are starting to drop.  My red blood cells were just slightly above the “threshold” for a possible transfusion and if they drop below the threshold tomorrow I may have my first transfusion, we’ll see.  My nurse explained to me that this is the reason that I’m a bit more tired & just slightly “winded” and not 100% energy-wise because I don’t have as many red blood cells carrying around the oxygen that I’d normally have.  My white cells are dropping as well (exactly the plan).  My kidney function is still a slight concern (my uric acid bumped up just a tiny bit since yesterday) but the docs are keeping a close eye on it and will just continue to monitor it day by day.  My vitals are still looking excellent & no sign of fever/infection (yet).  My new doc (he just started his week on-call yesterday) said its probably not a matter of “if” I’ll get a fever/infection, but more like “when” it will happen…so for now I’m just enjoying feeling good, having visitors and gaining  perspective J

-Chellie

An Attitude Pill?

In all my years studying psychology I’ve read LOTS on the subject of optimism, gratitude and happiness in relation to overall health (that mind/body connection that we hear about so often).  It has been VERY interesting being a “mental health” person here in the hospital where everything is completely dominated by the “medical model” of thinking about health.  I’ve actually had some amazing conversations with my team (esp. my awesome nurses) about my attitude about this whole situation.  It honestly amazes me that there hasn’t been a single visit from a social worker or psychologist while I’ve been on the oncology unit. I think it’s a sad oversight on their part because it is SO important to treat the “whole person” and not just the disease.  Luckily I have an incredible support system in place, in addition to an amazing treatment team here at the hospital.

You can’t bottle or get a good/positive attitude in pill form, yet it has been proven time & time again to be SO important in our overall health!  This is one of the main reasons that I’m determined to stay positive.  I think I’m naturally an optimistic person but there is always room for us to chose how we are going to react when life deals us a crummy hand.  At this point in time, my choice is to remain positive.  It would be easy to choose to be angry or sad but that’s not me.  Don’t get me wrong…I’ve had my fair share of mini-pity parties and “big ol’ ugly cries” in the past week, but I don’t want them to last long because I don’t want to spend my time being miserable.  Instead, I am choosing to stay positive and remain optimistic.  This is an opportunity for me to learn to give over my need/desire to control everything (and I do admit, I’m a serious control freak) and learn to tolerate uncertainty.  This is also an opportunity for me to practice many of the things that I’ve worked with clients on before and I’ve been particularly focused on practicing mindfulness and being in the moment.

 

All that being said, my husband and coworkers will still laugh knowing that I’m making my checklists (I am a checklist queen!)  There is something so rewarding about being able to check things off my “to list”.  Right now my checklists are more ‘short-term’ and this morning when I woke up I was able to check of chemo infusion #4 J   Both IV chemo infusions yesterday went well.  John was able to be in the room with me for the dose of chemo they put in my spinal fluid (wasn’t bad at all).  Today is Day 3 and I’m ready.  Bring it on!  Looking forward to visiting with my mom today before she heads back to California for the weekend.  I am still not a fan of sitting in bed and “looking” like a patient, so I spend a lot of my time sitting up in the chair by the window in my room, walking laps in the unit (I picture myself as Lightning McQueen as I “zoom” around the unit J), and keeping in touch with everyone via this blog, emails, texts, facebook and phone calls. 

- Chellie

hyperCVAD - Cool video game or just a crappy treatment?

2/21/13 – Day 2 of Chemo

So, onto Day 2 of Chemo!  So far, so good.  Successfully completed 2 chemo infusions yesterday (11:30am and midnight).  I slept through most of my chemo infusion last night (not a bad way to do it, if ya ask me!)  Feeling some fatigue but nothing too bad…still taking my laps around the oncology unit multiple times per day, draggin my IV pole along with me.  I joke around that my IV pole is my “dog” here at the hospital and I’m take him for a walk around the unit a couple times a day.  He needs a name…anyone have any ideas/suggestions? J

My chemo regiment is called “hyperCVAD” and both chemo infusions yesterday were a medication called Cyclophosphamide.  They are IV bags that are connected to my central line and take 3 hrs each to complete the entire infusion.  This afternoon I am also getting my first dose of methotrexate which will be administered “intrathecally” which is a fancy way of saying in my spinal fluid via a lumbar puncture.  Today & tomorrow I get more infusions of the cyclophoshamide and then on day 4 they switch it up and I get different meds (they start with V & D, hence the “CVAD” acronym J  My nurse just came in & dosed me up on my anti-nausea medications and infusion #3 starts in a few minutes here. 

Today is a beautiful day in Denver.  We had a little snow storm last night (not nearly the amount of snow fall they predicted, but it was enough to quiet down the city which I love).  I’ve got an amazing view from my hospital room of Downtown Denver and I can see the mountains as well.  So while I get my infusion this morning I’ll be sitting in my chair by the window watching the city & looking at the snow capped Rocky Mountains off in the distance J Not too shabby!

Thank you to everyone who has sent flowers, emails, text messages, phone calls, and facebook messages of support.  It means so much to me and I’m so blessed to have so many amazing friends and family members supporting me through this journey!  You guys are the best!!  - chellie

The start of chemo

2/20/12 – submitted by Chellie

Last night the oncologist came to visit & gave us all of the final diagnostic factors. Luckily my genetics tests came back and show no “Philadelphia chromosome” which would have been another factor to consider for my chemo treatment. The genetics test did show that I have a mutation known as MLL which means that my specific type of leukemia has a tendency to relapse. Dr. McGuiness explained that with the MLL mutation, I’ll likely be up for a bone marrow (aka stem cell) transplant once I get into my first remission. (Obviously the bone marrow transplant is down the road a ways, but when it happens my care will be transferred from Kaiser/St. Joe’s Hospital over to an oncologist at the Colorado Blood Cancer Institute @ PSL (the hospital next door). PSL and University Hospital are the only hospitals here in Colorado that do bone marrow transplants. I feel so lucky to live in Denver where I have access to this amazing care and we don’t have to drive long distance to get treatment (John and Scotty can stay at home and its only a 30 minute drive to the hospital to visit)!!

So, chemo starts today. Round 1 will consist of 2 phases (Phase A and Phase B). Phase A starts this afternoon and will last for 4 days. Most of my chemo this phase will be through my central line but on day 2 (tomorrow) I’ll also get a dose of chemo through a lumbar puncture as a preventative measure (to protect my spinal fluid from any leukemia cells). During and after Phase A of chemo I will be at very high risk for infection so I’ll have to be SUPER careful not to contract anything. The doc also mentioned that I’ll likely require red blood cell and platelet transfusions to keep my numbers up as the chemo kills all the cells (good & bad). Phase B of my chemo will start 21 days from today. If everything is going well I get to go home between phases, but if there is any sort of concern (fever, need for blood/platelets, etc) then I’ll have to stay put. All of my chemo will be done on an inpatient basis because it is so intensive and my team needs to be able to monitor my vitals every 4 hours, need to be able to give me “blood products” as needed according to what my labs say, and keep me isolated and away from any possible infections. One of the most interesting things that I learned from Dr. McGuiness yesterday is that once I get into my first remission & get ready for the bone marrow biopsy that I’ll have to get re-immunized for everything (perhaps Scotty and I can get our shots together  lol).

 She explained it very well and it makes sense that they are totally “deleting” my current immune system & “rebooting” it with the new bone marrow when we get to that point. I find that totally fascinating! Other good news: My MUGA scan (cardiac function) came back completely within normal limits so we are all set on that front! (One less thing to have to worry about with the initial phase of chemo). And the spinal tap earlier this week showed that there wasn’t as much progression into my spinal fluid! :-)

Update from Chellie's mom

2/19/13 submitted by Chel’s mom  Learning the terminology: B-Cell Acute Lymphoblastic Leukemia is also referred to as Acute Lymphocytic Leukemia or ALL. Chellie had a Double Lumin-Hickman central line inserted to deliver the chemo, other fluids, as well as a place to draw blood without additional IVs. An aggressive therapy to suppress bone marrow function has been ordered and is referred to as; Induction Chemotherapy. Unfortunately, Chellie’s uric acid levels were too high to begin the induction chemo today. After speaking with the hospitalist, Dr. Baumgartner, we learned the gene probe results are still not back. They are needed to determine the parameters of the specific therapy so the wait to begin tomorrow is not a major issue. Chel has been placed on several medications to decrease the uric acid level, increase potassium levels, and increased hydration. When the levels stabilize, chemo will proceed. There is a concern regarding kidney function with this specific therapy so the kidney team (nephrologists) will be standing by during the initial treatment. As of today, it looks like if the induction chemo begins tomorrow, Chel will be in the hospital for approx. 2 weeks with this treatment. The remission rate after the initial induction chemo is 80-90% with a 50% reoccurrence of the cancer. With this in mind, a stem cell transplant, also known as a bone marrow transplant, is being recommended “after remission”.

News from Chellie

Today we have a post from Chellie herself! Blog entry for 2/18/13 - How this whole thing started…. Last week I caught a cold/virus of some sort. I was at work on Tuesday and came down with a terrible sore throat. By Wednesday I was so sick I stayed home from work to rest. Thursday I decided it was time to go to the doctor so I called Kaiser and made an appointment at my usual clinic (had to see a different doctor b/c my regular PCP was out that day). Dr. Karen Anderson is who saw me on Thursday. As we were finishing up the office visit she was looking into the computer and just mentioned that I had been slightly anemic after having Scott and that we should just recheck that blood work to make sure everything was back to normal. Fast forward to Friday morning, 9am, my PCP calls (I thought she was just calling to say hello & see how I was feeling). She started with that but very quickly she turned very serious on the phone and shared her concerns about some blood tests that had come back and she mentioned to me that I needed a bone marrow biopsy immediately and that she had already been on the phone with the Kaiser Hematology/Oncology team. When she said the word oncology my heart sunk but I still was in shock, thinking this was all a mistake and that we’d figure it out when we got to the doctor’s office for the biopsy. I called John immediately and asked him to come home so he could come to the oncology office with me for the biopsy (and I am SO glad he came with me because bone marrow biopsies HURT and he was able to hold my hand the entire time). Before leaving the office we had a consult with the oncologist who confirmed through the bloodwork that I have leukemia but that we wouldn’t know more until we got the biopsy results back. I was handed my “what to expect from chemo” folder & told that I was to come back to the hospital on Monday to start treatment. Our world had just been turned upside down. We called family, friends, and work. I cried. My mom booked a flight immediately and flew out Saturday afternoon. We spent Sunday running errands and getting ready for me to be away from home for a few days. Monday morning we arrived at Exempla St. Joseph’s Hospital as instructed & I was admitted to the hospital (10th floor – oncology dept). We met with the oncologist and we finally got my official diagnosis: B-Cell Acute Lymphoblastic Leukemia. Apparently it’s much more common in kiddos but it obviously occurs in adults as well. I spent the rest of the afternoon getting more diagnostic tests done. I had my first lumbar puncture (spinal tap) as well as a MUGA scan (a nuclear medicine test that measures cardiac function). The MUGA scan was ordered to see what my “baseline” cardiac function is so that they know if there are any cardiac effects from the chemo. The lumbar puncture wasn’t too bad (it was nothing compared to the bone marrow biopsy) and the MUGA scan was slightly claustrophobic but no pain whatsoever.

Into each life some rain must fall

I created this blog because my brother called me on Saturday to let me know that my sister-in-law Chellie had been diagnosed with leukemia. There were not many details available, but our family is committed to helping Chellie get better and stay cancer free. I will be providing updates on her condition as well as letting you all know what you can do to help the family through this stressful time. jdv PS: Here is the link to a fundraising page to help offset the families expenses during this stressful time.