Happy Birthday!!!

My transplant coordinator called tonight @ 7:45pm (from home) to tell me she had checked her email one more time just for me and that our results were in.  KYLE IS A PERFECT 10/10 MATCH.  The odds were stacked against us... Siblings only have a 25% chance of being a match...but we beat the odds on this!  Thank you for all of your prayers, He hears them and is looking out for me!  I am at a loss for words today, just feeling totally blessed and basking in the amazing news! :). We can proceed with the pre-transplant physicals and I will likely get to skip 2 rounds of chemo!  Best belated birthday present ever!!  Thanks Ky!

-Chellie

Chemo is a Blast

Still no news from my transplant coordinator regarding the high resolution test results.  She did call me today to say that she hasn't forgotten about me and she thinks we should know tomorrow.  At this point I am not sure whether to believe her and don't want to get my hopes up.  We'll see.  All I know is that she promised to call me as soon as she knows and I believe her on that part.  For now I just continue to pray :)

I spent all day long at the output. Kaiser clinic today.  I arrived @ 7:30am and didn't leave till 3:30pm.  I got blood drawn, 2 units of blood transfused, had some nice conversations with a few other patients and joked with my nurse who was having a rough day thanks to the manic/bipolar woman who sat next to me in the transfusion room this morning.  At one point the nurse called the unit social worker to come in and talk to her but she was too paranoid to engage with him.  I felt bad for the nurse and the social worker and I hope that the lady follows through with some mental health treatment soon.  The whole experience just made me miss work even more. 

Dr. Libel stopped by my chair today @ the clinic and shared some concerning news.  She said today my blood showed a few blasts (not good) but she quickly explained that she thinks it might be related to the Neupogen injections.  She said it is possible that my bone marrow is working overtime and the medication might be the reason my bone marrow is releasing some immature cells (aka blasts).  So, our plan is for me to stop the injections after today's dose and see how things look next week.  She told me that she is hoping that without the medication over stimulating my bone marrow that it will churn out only healthy/mature cells.  We will monitor and see next week.  Prayers for  improved/blast-free blood work are greatly appreciated. J

-Chellie

Birthday musings

Yesterday I got a platelet infusion at the outpatient clinic.  I wasn’t at the threshold for transfusion just yet, but I had a couple of bloody noses over the weekend and my doc wanted to make sure that my platelet count got a boost to help with the blood clotting issue.  Since the transfusion my bloody noses have gotten better.  Yay.

Last night my transplant coordinator, Callee, called & said that she still doesn’t have the results of the high resolution tests for whether or not Kyle is my match.  She was simply calling to let me know that she hadn’t forgotten about me and that she was going to be out of the office today at a conference but she would check her email throughout the day and let me know if she heard anything.  She also said that she expects that we will hear back on Wednesday.  I am SO ready to hear the news.  Callee was so sweet and told me she had really wanted to be able to tell me before or on my birthday, but we are at the mercy of the lab.  So, we continue to wait and pray J

I got the hats that ordered online last week in the mail today.  Fun accessories and they will keep my head warm now that I’m a baldie J lol  John will be home shortly with my birthday dinner (since I can’t go out to dinner due to being neutropenic we agreed to do Papa Murphy’s pizza tonight and we’ll go out and celebrate my birthday once my oncologist gives me the “all clear”).

I had my first major side effect from all of this treatment last night.  The bone pain from the Neupogen injections is intense!  I told John that it was worse than contractions (because there was no break between the pain).  I’ve never experienced pain like this before (it hurt so bad that it make me shakeL).  Yesterday, I tried hot baths and showers, ice packs, and our heating pad to tough it out without having to take another medication (I’m not anti-medication but I hate to take things if I can manage the pain some other way).  Finally last night I took John’s advice and I called the on-call doc to ask what pain medication I could take (given the fact that I’m taking so many other meds and they all have the potential to interact and have to be processed through my liver & kidneys).  He gave me several options and John, being the awesome husband that he is, went to the pharmacy & picked up some Motrin PM for me.  Totally did the trick.  Apparently this bone pain is not particularly responsive to the regular prescription narcotics and the doc said that Motrin would be the best thing to take (according to a study he had read).  He was right!! 

I’ve been staying on top of my Motrin doses and the bone pain is more manageable now.  I’ve only got a few more days of injections left (hope my counts rebound and I can stop on Thursday or Friday) and the silver lining is that the bone pain means that the medication is working,  kicking my bone marrow into overdrive to produce new blood cells.  I can certainly handle a few more days of discomfort (now that I’ve got the Motrin) and I know that its temporary.  This holds true for most of the stuff I’ve been through recently.  I keep reminding myself that the discomfort, loss of being able to work,  annoyance with having to go to the doctor 3-4 times per week, and all of my treatment is temporary.  Temporary is totally worth it and totally “do-able”  even if I have to make momentary goals for myself in order to get back to “life as usual” J

-Chellie

Warning Signs & Rose Gardens

A friend of mine recently sent me an email.  She got married the same month that we did and has a little boy about a year older than Scotty.  She went through cancer treatment (different type of cancer than me) right after getting married and is in remission now.  In her email she told me about something that she’d heard while attending a speech by Rudy Guiliani.  She wrote "Cancer is not a death sentence, rather a warning sign and a chance to change something or do something in your life. Some people don't get warning signs.  I think I enjoy each day a little bit more when I think of it this way. Cancer is an opportunity... (twisted I know, but a truth).”

Her attitude is very similar to mine and her email really rings true for me.  I am so thankful that I got a “warning sign”.  I have the opportunity to really prioritize things, change a few things in my life, and be more mindful and present during each day.  One of the biggest losses that I’m struggling with right now is the fact that as part of my transplant process I’ll have to undergo total body irradiation.  That, in addition to all the chemotherapy that I’ve been through & will have during transplant, will most likely leave me infertile.  Hearing this from Dr. Liel and doing my own research online (everything confirmed what the doc had said) made me cry.  John and I had planned to have a bigger family and had just recently started talking about trying again once Scott turns 1 yr. 

While this is a major loss and I’ve shed many tears about it, my friend’s email comes to mind.  Its up to me to chose my reaction to this news.  Of course I’m very sad, but this sadness isn’t going to overshadow the fact that I have a beautiful family right now and I am choosing to use this recent diagnosis as my “warning sign”.  We had difficulty getting pregnant to begin with, trying for over 2 years and seeing many doctors.  Maybe, cancer or not, we wouldn’t be able to have another biological child.  Who knows?  Either way, this is my “warning sign” to make sure that I am present & treasure every moment with Scotty and our little family as it is. I also have the opportunity to change a few things in my life that aren’t serving me well and needed to change but I was “too busy” to address before.  I thank God every day that he brought Scott into our lives when he did and that he’s a happy, healthy little boy.   We were blessed with the most amazing little guy and every day now I’m so much more present with him.  I know all moms and dads love being with their kiddos, but I can’t get enough of him these days and watching him learn about his environment is awesome.  When he smiles at me and interacts now, it absolutely melts my heart. 

As my friend said in her email, this is my opportunity.  To “slow down” and cherish the times with my little man and act/change things that I thought I was too busy to change before.  Even though there are things that I can’t do with Scott right now (doc said I’m not allowed to change diapers while neutropenic...poor John J lol), I am much more mindful when I rock Scotty to sleep, feed him a bottle, and play with him.  He’s growing way too fast already and I have mixed emotions about having to be away from him for several weeks during my transplant, especially because I will miss “baby milestones” which I won’t get to experience again. At the same time, I know that this is “just a few weeks” in the grand scheme of things and that I’m ready to start making changes and seizing this opportunity for the better.  It will ultimately allow me to continue to watch him grow, listen to him, and be present with him for many more years to come. J   

These days I’m not just stopping to smell the roses...I’m living in the rose garden. J

- -Chellie 

The "Trickle Down" Effect

Happy Friday!  Yesterday’s spinal chemotherapy was quite a production.  This is the first time I've had it done on an outpatient basis and when I got to the clinic the radiology tech asked me where my driver was.  I drove myself to my appt. and had planned on driving myself back home from the clinic, no biggie.  Apparently the radiology clinic policy is that anyone having a lumbar puncture has to have a driver to take them home after their procedure and that you are supposed to lie flat for 12-15 hrs after the procedure!   (Enter my stubborn/independent personality!) J lol  I wasn't trying to be a pain in the butt, however when I told the tech that it was no big deal and that I’d had 4 lumbar punctures with 3 doses of spinal chemo in the past month and that I would have no problem driving myself home she disagreed and called the radiologist in protest.  I tried to point out that I would have to get up, get dressed again, and walk to the car anyways.  I also pointed out that I’d been up walking around minutes after each of my previous lumbar punctures and that if I developed a headache, of course I wouldn't drive myself.  45 minutes later the oncology nurses upstairs came to my rescue and bargained with the radiology dept.  Sheri, one of my favorite oncology nurses promised the radiologist that she would bring me upstairs and observe me for a while before letting me drive home.  Once we got upstairs, she took my vitals, asked me if I felt okay to drive and 20 minutes later she let me drive home. J  I’m back at the clinic this morning and the same nurse smiled at me when I walked into the transfusion room and asked how my drive home was yesterday J lol  I've said it before and I’ll say it again, Oncology nurses ROCK! J

Yesterday I did a little bit of online shopping and bought 3 cute hats since my hair is all gone now.  I’m looking forward to getting them in the mail next week!!!  I NEVER wore hats before (didn't own a single one) and now I am looking forward to having a new accessory to add to my outfits J lol

Dr. Liel, my oncologist, stopped by my chair at the infusion clinic this morning and said that she had talked to Dr. Nash (transplant doc at CBCI) yesterday.  She said that pending the results of the high resolution tests we will very likely be able to move straight to transplant (skipping the next 2 rounds of chemo that they had planned to do while searching for a donor).  I AM THRILLED!!  My 33^rd birthday is next week and this is the BEST birthday present ever! J  I am looking forward to getting this transplant process started because that means the sooner I get through it, the sooner I can get back to work!  As silly as it may sound, even during my maternity leave a few months ago I was itching to get back to work & be a “productive member of society”.   I get a lot of my identity and meaningfulness from work.  I LOVE helping clients who are in crisis and those who are entering the mental health clinic for the first time.  I can’t help but wonder if all these docs and nurses who have been helping/treating me realize that their work with me will help me in turn get back to work & help many more people, and really they are touching many more lives than they even realize!  I like thinking about this “trickle down” effect, it makes me smile J I’m one of those VERY lucky people who has found my niche and it doesn’t feel like “work”.  After bouncing around to 4 mental health centers in the past 7 years, I’ve finally found the best team /coworkers around and many times throughout the day I think about what they are doing and how much I can’t wait to get back to work!! 

-Chellie 

The Price of Good Health

Another day at the outpatient clinic.  I drove downtown and got blood work done at the Kaiser oncology clinic this morning.  While I was waiting for my results, Dr. Liel stopped by to say that the final results of my bone marrow biopsy last week were in and that everything looked good!  I told her that Kyle is a preliminary 6/6 match for transplant (still waiting on high-res tests) and she literally high-fived me and said how excited she was for me.  I like that I got to give her some good news since I’m sure her days as an oncologist are not always filled with such good news!  She admitted to me that she hadn’t originally been too optimistic since its only a 25% chance for siblings to be matches, but she seemed genuinely thrilled for me that the likelihood of transplant is becoming much more tangible J

My counts today showed that I’m the downslope (exactly what we expect given the fact that I just finished chemo a few days ago).  Will probably be neutropenic again by Friday so will be wearing my Michael Jackson mask anywhere I go J (or just staying home and sending John out to do all of my errands).  I’ve got another dose of spinal chemo tomorrow (to be done on an outpatient basis at the downtown Kaiser clinic).  I picked up my self-injections from the pharmacy today on my way out of the office.  Thank goodness for good insurance through my employer!!!  My 10 days worth of injections without insurance cost $4603.45, but with my Kaiser insurance it was only $250.00 for this particular prescription.  I am SO grateful for this!! 

Should know by mid-week next week about the official results from the high-resolution tests.  Dr. Liel and my transplant coordinator made it sound as though as soon as we get the official word back that we should be able to start the “work-up” for transplant.  This is a process in and of itself, but still SUPER exciting to me because it may cut out an entire 2 rounds of additional chemo they had talked about (if a donor/match wasn’t found right away).  That means I might get to skip a month or two worth of chemo & go straight to transplant!!  We’ll know next week J

-Chellie

Going Bananas!

Just hanging out at home and resting today.  My electrolytes are a tad off (high sodium and low potassium) due to all the chemo and the side effects of the meds they gave me in the hospital…so my “job” today is just to drink lots of water, stay away from salt, eat bananas, and rest.  J  Doc said I could take potassium pills (um, no thanks – those suckers are HUGE), but also said that I could also probably manage it with diet, so increasing my banana, nut & OJ consumption is on the agenda today.  So far today I’ve had a few saltines, a yogurt, a banana, glass of OJ & and a peanut butter cookie.  My MIL stocked up our fridge & freezer with goodies before heading back to Pueblo yesterday and left some amazing peanut butter cookies in the freezer.  Yum!  (Thanks Judy)!

After the promising news yesterday about Kyle being my potential match I am still praying that the “high resolution” tests come back as a match!  This would seriously be the best birthday ever (next week) if that is the case!!! J  I keep hanging on to the word “promising” as that is how my transplant coordinator described the outlook. For those of you who don’t know, Kyle saved my life once already as a kid (Ky, do you remember when we locked ourselves in the trunk of the Maxima before that soccer game? Stupid kids J lol). Here’s hoping that the high resolution tests come back in our favor and that the transplant doc at CBCI gives us the “go ahead” to move forward as planned!! 

-Chellie 

Promising...A Word for Mom

Promising...

It washes over me with comfort.

Promising...

a word that is more than a noun, verb, or adverb.

It gives hope and faith, restores a trust and happiness I thought might be lost.

Promising...

"Kyle's blood work looks promising," say the oncologists.

The thoughts, prayers, and energy sent out to the universe asking for favor...

Promising...

A life giving bone marrow match looks promising from a younger brother who also said,

"I'll be the match Mom, you'll see, I'll be the match."

I know doctors can't be more specific but today,

I'll take promising and hold it to my heart and thank all who hold Chellie up with theirs.

Promising...

It washes over me and heals my heart!

Promising...it looks promising.

-Chellie's Mom

Home Sweet Home - Part 2

Home again!  Last night my methotrexate level that needed to be 0.1 for discharge was still 0.11…so close.  So my awesome night nurse drew another level at 3am this morning (so it would be ready when the docs arrived this morning for rounds) and my level was 0.07!  Thank you night nurse, Val, for getting that level back so I was able to discharge this morning!

John came to the hospital this morning, picked me up, and brought me home.  I took a nap in my own bed (glorious) and spent time this afternoon hanging out with my boys.  I have to start self- injections again tonight and I am going to have to be extremely vigilant about hand hygiene and staying in the house this week.  Prayers for continued health (no fevers/infections) and that I can manage to stay out of the hospital would be wonderful.

BEST NEWS YET…we got a call from my transplant coordinator this morning that Kyle is a preliminary match for me for transplant!  I was going to try and keep it “on the low down” until we know more (few more tests) but I am so excited I don’t think I can wait long enough to share the good news!  We are a preliminary 6/6 match and the nurse said that they will send it for additional “high resolution” testing.  We should know sometime late this week or next week, but it looks promising! J

God is SO good! -Chellie

Sneak me in a file - these bars are strong.

Happy St. Patrick’s Day!  Today’s blog update is late (& shorter) because it was a bit of a rough morning.  I was REALLY tired (combo of the new chemo, low blood counts, and being up all night (having nurses in my room every 2 hrs isn’t very conducive to sleep).  This round of chemo has required a lot more monitoring by the nurses (neuro exams & eye drops every 6 hrs, urine ph levels and vital signs taken every 4 hrs, and then different meds and lab draws throughout the day/night.  And of course, they are all staggered at different times so I’ve got staff in & out of my room constantly!!!

To help with my fatigue, my doc ordered 2 units of blood for transfusion.  I got my first one earlier this afternoon and took a nap while it transfused.  Woke up feeling much better and I’m getting my second unit right now.  (Thank you again to all the blood donors out there!) J

Judy (my MIL) was nice enough to stay an extra day at our house to help with Scotty… so John is on his way to the hospital to have dinner with me J  I’m waiting for my nurse to take my methotrexate level here in a few minutes.  Yesterday’s level was down from 15 (Friday) to 0.38!  My oncologist said we hope to see that it continues to drop dramatically like it did yesterday, but sometimes people kinda level out right above 0.1 (the threshold for going home)…I’m praying that my levels continue to drop dramatically & that I can bust outta this joint tomorrow morning as planned! Lol

-Chellie

The eyes have it! or Eye of the storm...

Yesterday went well.  I finished my methotrexate (the Mountain Dew chemo) and they got the level over to University Hospital.  Now we wait for my level to come down from 15 to 0.1 before I can discharge from the hospital.  Dr. Morris did my intrathecal (spinal) chemotherapy and that went well.  My cousin Heidi came to visit me at the hospital and it was fun to chat with her.  I still have a slight headache but the biggest issue is that the new chemo that I’m on starting last night requires that I take eye drops to protect my eyes (there are possible eye and neurological side effects from this particular medication).  The eye drops and repeated neurological screenings are one of the things the nurses do to protect my eyes and monitor any neurological stuff that may happen from the chemotherapy. 

Problem is:  I don’t DO eye stuff!!!  I haven’t been to the eye doctor in YEARS. Thank goodness I’m relatively young and have good vision.  I would rather go to the dentist , get an injection or a spinal tap, any day of the week.   I know that its completely silly, but I swear my eyes just squeeze shut on their own when anything comes towards them and touch my eyelashes…it’s a primitive reflex!  I don’t even wear eyeliner because I don’t like things near my eyes like that!  When we had to start the eye drops yesterday my nurses laughed and joked with me, but I’m pretty sure they think I’m nuts.  We have tried 3 different methods, none has been great but we’ve eventually been able to get to required 2 drops in each eye after multiple attempts J lol  Eye drop time (4 times a day) in my hospital room reminds me a little of this episode of friends:  http://www.youtube.com/watch?feature=player_detailpage&v=jP8_NlD6S_E  J lol

Since Judy (MIL) is here helping out this weekend, John can leave Scott at our house with her and he will come visit me at the hospital this afternoon/evening for “date night” in my hospital room.   I’m looking forward to it!

We’ll know more about how well my methotrexate level is dropping once we get the results back again this afternoon/evening (doing daily levels).  Still have my fingers crossed for a discharge from the hospital on Monday as long as my body cooperates! J    

-Chellie    

Doing the Dew!

Day 2 of chemo and doing well.  Slight headache and a little fatigue so far, but nothing major and I told my nurse I didn’t even need Tylenol for the headache.  This Phase B chemo started with a 24 hr drip of a bag of yellow chemotherapy that looks like a big bag of Mountain Dew.  Once it finishes (around 3 this afternoon) they will draw a blood level and it will be driving “stat” across town to University of Colorado Hospital’s lab.  Apparently they are the only lab in town that does these specific levels.  The hospital oncologist will monitor this blood level for the next few days and this is the level that has to come down to a certain point before I can discharge from the hospital.  While they monitor this level,  I’ll get 3 more doses of new chemo drugs.  I am also scheduled to get a dose of spinal chemo this afternoon with the same anesthesiologist that did my last 2 procedures. 

I have no idea how they came up with this whole “hyper CVAD” chemotherapy protocol, but thank goodness for clinical trials, medical research and the funding that keeps it all going.  I have said so many times how thankful I am that its 2013 and there are treatments available!  I talked to the Kaiser Transplant Coordinator today and got some more information about my pending stem-cell transplant process as far as the insurance goes.  Kaiser has officially approved me for transplant (woo hoo), so now its just up to my oncologist and the transplant doc over at CBCI to do my full “workup” to make sure that I’m eligible (clinically) once we get to that point.  Kyle and I have both done our bloodwork and we are just waiting for the results of the HLA typing.  We should hear back sometime the last week of March.  Wouldn’t that (and hearing that I’m in remission) be the BEST BIRTHDAY PRESENT EVER?!?! J

John’s mom is coming up this weekend to help with Scott so that John can come visit me at the hospital tomorrow afternoon.  Our friend Gus (who is an amazing financial advisor) is also coming over tomorrow to help John look over our budget/finances and give us some advice to make sure we are making smart decisions and planning well for all of this.  Thank you to everyone who has sent gifts or donated money …you are SO generous and we have been overwhelmed by your generosity!  J  I know I say this often, but I mean it with all of my heart…I feel so lucky and blessed for all of the family and friends in our life who continue to send their love, support, “juju” and prayers.  We are truly surrounded by your prayers and it is so comforting!!!

-Chellie  

Round 2 - Ding ding

Today is a wonderful day!  John and I met with Dr. Liel this morning and she shared  very good news with us.  My preliminary bone marrow biopsy results from Tuesday looked good.  Her exact words were “it looks as good as I’d hoped”!!! J  I am SO relieved to hear this.

Since my biopsy results looked good and my counts from earlier this week were still where she wanted them, she gave me the “go ahead” to start Phase B of my induction chemotherapy.  I admitted to the hospital again this morning for what we hope will be a 4-5 day hospitalization.  I’ll receive 4 different (new) chemotherapy agents and get 2 more doses of spinal chemo.  I had pretty minimal side effects the first time, so I’m hoping that it will be minimal again this time (even with different meds).  Fingers crossed.

Here we go with Round 2… J

-Chellie

Eye on the Prize

Today is my “day off” from medical appointments but I have lots to get done.  #1 on my list is to pack my bag for the hospital as I’m headed back there tomorrow (after an appt with Dr. Liel @ 8:30am to discuss the results of the bone marrow biopsy that I had yesterday).  We anticipate that the hospitalization will be 5 days this time around (fingers crossed), but like last time it will totally depend on my counts & they will also have to monitor my blood chemistry much more closely this time (different chemotherapy agents) to make sure that certain levels of the drugs come down to an acceptable level before they would allow me to discharge home. 

Yesterday’s bone marrow biopsy was much more tolerable than the first one.  I had a different provider, requested & got a medication to take the edge off of my anxiety, and it went much faster (still hurt, but not nearly as bad as the first time).  So glad that it is over and very hopeful that the results we hear tomorrow are what the doctor expects!

In talking with John yesterday on our way home from the bone marrow biopsy, we were joking about how my treatment for this whole ordeal will likely be just over the same amount of time that Kim Kardashian spent married to Kris Humphries.  Funny to think that my leukemia treatment will be about the same length as a “Kardashian marriage” J  In that perspective, it seems like a blink of an eye and hopefully I’ll be back to my regular, day-to-day life.  In all seriousness though, John and I also talked about how this fall we’ll celebrate our 5 year anniversary & Scotty’s 1^st birthday.  God has blessed me with a wonderfully supportive husband and a healthy baby boy and I am SO looking forward to celebrating these milestones with my little family with a trip down to my parent’s cabin in Pagosa Springs later this fall.  I think about this often (during my chemotherapy treatments especially), visualizing myself snuggled up in a sweatshirt and jeans, holding Scott, drinking hot chocolate on the deck of the cabin as John and I  listen to the river.

Each hospitalization, chemotherapy drug, doctor appointment, bone marrow biopsy, medication I swallow, and blood draw I do these days is just one step closer to being cancer-free and taking a celebratory trip this fall.  In the meantime I celebrate and appreciate the baby steps…making it through yesterday’s biopsy, having time this afternoon to make a favorite recipe for dinner with John here at home, and the fact that my numbers rebounded as planned after Phase A so I can admit to the hospital tomorrow to start Phase B of chemo…one step closer!  Lets do this thing J

-Chellie

Sucking the marrow from life without choking on the bone

Another outpatient appointment at Kaiser this morning and another “get outta jail free” card (no transfusion needed).  My numbers looked good again today, trending in the right direction (still hanging right around the threshold for a possible red blood cell transfusion, but since I’m still feeling good & not having any shortness of breath, they let me go) J  Good news is that my doc moved up my bone marrow biopsy that had been scheduled for Thursday…its now going to be tomorrow afternoon @ 1pm.  I’ve requested some medication this time (the first one hurt, big time, and now I’m anxious about it, so they’ll give me an Ativan ahead of time tomorrow).  With the bone marrow biopsy being moved up that puts me back on track for a probable hospital admission later this week (Thurs?) for Phase B of chemotherapy.  (You know me, I like to stay on schedule and be on time for everything J lol

I have been experiencing some “bone pain” from the injections I had to give myself last week.  It is the weirdest feeling to have my hips and my back be so sore, but it makes sense because those injections help my bone marrow work overtime to stimulate growth of healthy blood cells.  I never had growing pains as a child, but I imagine that they feel similar?

 

My MIL, Judy, is coming up from Pueblo tomorrow afternoon to visit Scotty.  I’m hoping that if I feel up to it after my bone marrow biopsy (and if my doc approves), that John and I might be able to have a little date night (even if its just going to get take out & going for a drive) while Scott hangs out with Grandma Bates.  :)

Continued thanks for all of the prayers and support.  Fingers crossed that the results of my bone marrow biopsy tomorrow are exactly what Dr. Liel wants to see (we’ll know results on Thursday) & that we can proceed forward as planned with Phase B of chemotherapy.  To quote one of my favorite cards that I got from my coworkers “Chemo Sucks….but if it sucks the cancer right out of ya, then Yay Chemo!” J

-Chellie

Snow day

My apologies to all for posting this 2 days late (the weekend got away from me was to be posted Mar 9) - jdv

It’s a snowy Saturday here in Denver.  No big plans today, exactly the way I like it! J  I spent the morning snuggling with Scotty and this afternoon I’ll enjoy some time in my kitchen making homemade soup and bread for dinner.  PERFECT way to spend a snow day!  Being in my kitchen makes my heart sing and John is awesome about doing the dishes as I make my culinary messes J

Had another outpatient appointment yesterday.  Mom and I packed up all of our stuff (again), assuming I’d have a transfusion since we were going into the weekend and my numbers had been creeping along kinda low all week.  Low & behold, my numbers yesterday rebounded and that meant we were able to skip out early again, no transfusion! J  My platelets nearly doubled (woo hoo) and my WBC is high enough now that I don’t have to do any injections this weekend!  I was also able to get rid of the big bandage/dressing on my central line yesterday (had to be on for the first 2 weeks to protect it from infection) and now I just have my line that is held down with a do-hicky called a “stat-lock” (major improvement!).  I can shower without having to worry about it getting wet now!

With my “found time” yesterday afternoon and no need for transfusion, my mom and I were able to run lots of errands before she headed back to CA.  Feels so good to get items checked off my to-do list.  We even ventured to Costco (shh, don’t tell my doc) which I’d been looking forward to since my time at the hospital.  Don’t worry, I wore my mask and made sure not to touch anything J lol

I continue to be completely overwhelmed by the outpouring of love and support from everyone.  Yesterday a friend of mine gave me a check from her church that literally brought tears to my eyes.  I can’t even begin to describe the thoughts and feelings that come up for me as friends, family and total strangers offer their support to my little family!  As funny as it may sound given the circumstances, I feel INCREDIBLY BLESSED! 

-Chellie 

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!