Light the Night!

I had an amazing time last night at the "Light the Night" walk here in Denver at Washington Park with the rest of team "Go Cells Go" :). My dad was able to fly in from CA to join us for the walk and we met up with the "Colorado fam" (the Van Huysen & Baskfield crews) as well. Special thanks and shout out to my amazing cousins for "blinging us out" with sparkly orange accessories, feather boas, Hawaiian leis, and team visors. I must say, we rocked the "Leukemia awareness orange" :). The weather was perfect (cool and comfortable in long sleeve shirts and jeans). Our family will definitely be making this an annual event. :). 

My heartfelt thanks to all of our very generous donors/sponsors who contributed to our team fundraising efforts... Team "Go Cells Go" raised over $1350.00 for the Leukemia & Lymphoma society Rocky Mountain Chapter!!! You guys are amazing and I can't thank you enough for contributing to this organization which has such an impact on our family in the past 8 months! 

As far as my GVHD rash goes, it is getting a little bit better each day and hasn't spread, so we are on the right track! The rash is like a bad/blistery sunburn but has started to dry up and it's now peeling (lovely huh?)... the doc said that this is the natural progression, so at least it's being predictable and doing what it needs to do in order to keep healing and protect my skin from any long term damage/discoloration. The massive dose of steroids is helping manage it and so far no blood sugar issues have popped up (yay!). I am really trying hard to control my calorie intake because prednisone at this massive dosage makes me feel SO FREAKIN hungry and I don't want to gain weight after working so hard all summer to lose it! :). Just doing the best I can and I will just have to get back on the wagon when I can :)

Scotty has an eye infection right now (ugh) so were are in "code Clorox" mode at Casa Voss right now, making sure that we keep things as sanitary as humanly possible since eye gook is so contagious! He started drops this afternoon and we are just praying that we can keep it contained to him and that I don't catch it!!! (I don't do eye drops well and an eye infection could be nasty for me!)

-chellie

Code Clorox!

Well, I’ve had a minor setback.  Last week we tried to taper my immunosuppressant medication and it was a disaster.  I broke out in a bright red rash on my hands, arms, chest, neck & back.  We had to come back from our trip down to Pagosa Springs 2 days early as the rash quickly spread to my face.  This weekend I had to make a trip downtown to the Emergency Room (thankfully Dr. Nash was the on-call doc at the clinic over the weekend, so he was able to meet me at the ER and look at my rash).  He agreed that it had progressed beyond just a minor rash and that it needed to be treated immediately to avoid permanent damage to my skin in those areas.  So, at the ER they gave me a MEGA dose of steroids via IV (first time in 6 months that I wished I still had my central line…those tubes hanging out of my chest would have come in handy since they had to poke me twice and draw 4 bottles and 8 vials of blood to run all sorts of labs).  I had never had them draw blood into bottles before, but they drew 4 bottles (size of the old small coke bottles) that mixed with some solution so they could culture them & make sure I don’t have any sort of blood infection in addition to the GVHD rash.  The ER visit was surprisingly quick and I was out of there in less than 3 hrs (unheard of as far as my experience working in local Emergency Departments!)   I filled 3 new prescriptions (pain meds, oral steroids & a higher potency steroid cream to apply to my skin.)

I am getting better day by day…I would say that my rash is about 30% improved and certainly isn’t as “angry-looking” as it had been.  It still looks like a really bad sunburn but at least it doesn’t feel “blistery” like it did over the weekend.  Aside from the rash, no other GVHD symptoms except a very minor mouth sore.  Dr. Nash thinks that the super high dose of oral steroids that I’m going to be on for the next 6-8 week should help with the “mucositis” (mouth sore) as well.

 

As a result of being put on the super high dose of steroids and having to increase my immunosuppressant medication again, I will be even more immune-compromised than I have been in a while.  We are on a “code Clorox” protocol here at the Voss household and everything must be wiped down with Lysol/Clorox wipes daily again. L  I have to wear a mask out in crowded public places again, and need to really watch what I eat since the massive dose of steroids makes me SUPER hungry.  I have worked really hard recently to lose weight and I don’t want to blow it!  I am also going to have to be really careful about the possibility that the steroids might mess up my blood sugars.  I have never had blood sugar issues, but I do remember that when I took steroids back in February as part of my very first chemotherapy the docs and nurses were really concerned about how it affected my blood glucose and I had to take insulin shots temporarily because it got so out of control.  Please pray that we can keep my blood sugars under control and that the steroids do the work they need to do without wreaking havoc on my system, appetite, etc.

 

In other news, we are looking forward to the Light the Night walk on Thursday.  My dad will be flying into town to walk with us and we have several local friends and family members who will be walking around Washington Park with us that evening! J  Thanks to everyone who has so generously donated to our fundraising efforts, you are amazing and have made a difference in the lives of blood cancer patients and their families!  On Thursday night @ 7:30pm, we’ll have our first annual “Go Cells Go” walk and I’ll post pictures to the blog afterwards J

-Chellie

Moving Up

Lots of good news!  I saw Dr. Nash earlier this week and I have "graduated" to the 3rd floor of the clinic.  All  of my appointments are on the 3rd floor now (where they treat the "less acute" patients).  3rd floor patients don't get any infusions or medications (2nd floor does all sorts of chemo infusions, blood/platelet infusions and nutrition replacement) at their appointments.  Yipee for being on the 3rd floor now!  I also got permission from Dr. Nash to decrease my immunosuppressant medication again!  So I am continuing to wean off of that medication and hopefully will get to discontinue it at the end of next month.  I am also cleared to spend a weekend at my parent's cabin in Pagosa Springs, so we will be heading down there next weekend! J

Dr. Nash said I will have to drink bottled water and that I am not allowed to go in the hot springs or the river...but I am still so excited to get out of town and relax on their deck and listen to the river! J

More amazing news...our team ("Go Cells Go") has raised just over $1000.00 for LLS- Light the Night walk at the end of this month.  We have several family members registered to walk with us (Yay Van Huysen & Baskfield families!!) and we are really looking forward to it! I will post some pictures after the event of our group.  Thanks again for everyone who has already donated...you are making a difference in the lives of cancer patients!! :)

Other news: We have been getting LOTS of rain here in Aurora (flooding has been catastrophic in other parts of the Denver Metro area).  Thankfully, our house has remained dry and we were not stuck out on the roads like many others around town.  Please keep the victims of these recent floods in your prayers. 

I am continuing to do well in my recovery.  I have hit a bit of a "speed bump" recently with some mouth ulcers which my doc doesn't are GVHD related (yay) and instead he believes it is a flare up of a virus...so we are keeping a close watch.  I am continuing with my baking soda mouth rinse and Biotene rinses.  I have also had a couple of more intense waves of nausea the past few days but the extra meds I have available for this side effect have been pretty helpful.  All in all, still feeling good and really hoping to return to work next month if I can find a position that will be a good fit for me! :)

Thanks for all of your continued support, love, and prayers...they mean the world to me!

-Chellie

Leaving the Borg and becoming human again

Today is a very good day! At 11:10am I had my central line removed. That's right, for the first time in nearly 6.5 months, I don't have tubes/lines hanging out of my chest!!! I am beyond thrilled to have the "Hickman trifusion tunneled catheter" out. The radiologist who pulled it out this morning is actually the same guy who put it in before my transplant...so it went full circle which was kind of cool. He was awesome and even showed me the line after he pulled it out (I specifically asked to see it). As elated as I was to have it out of my chest, as I looked down at it I realized that this device played a huge part in my transplant. It was through this "do-hickey" that I received my chemotherapy that wiped out my previous immune system so I could "reboot" and build a new one. I think the biggest thing that hit me was the fact that the life saving cells I received from Kyle were injected through that central line. At one point (about a week post transplant) I was receiving all of my meds and blood products all through this little device. That line has been a major part of my life for the past 6 months. I certainly won't miss having to take care of it (cleaning with special solution, flushing and heprinizing (sp?) all three lines everyday)! And it feels so liberating to not have to worry about it anymore. I feel like I have my body back! :)

Aside from the big news that I mentioned above, not much else is going on. Right now I am hanging out in the hospital just passing time until my clinic appointment later this afternoon. Bloodwork continues to good and my next big excitement will be around Day 150 when I get to lower my dose of my immunosuppressant medication again. When that happens we will monitor everything closely for any signs of GVHD which might decide to pop up. Dr. Nash said that if they pop up then I will have to go back up on my dose and possibly start some new meds, but I am optimistic that I will continue to be his "model transplant patient" (hahaha) and that I will continue on without any complications!

We will be celebrating my central line removal tonight with pizza and Broncos football! I have been looking forward to fall & football since I was diagnosed way back in February and it seems like a very fitting way to celebrate! :)

Go Broncos!
-Chellie

Light the Night Walk

Gearing up for the Leukemia & Lymphoma Society’s “Light the Night Walk”

Today is officially 4 months post transplant and exactly 1 month until I participate in my first “Light the Night Walk”.  Light the Night is biggest annual fundraiser for the Leukemia & Lymphoma Society (LLS).  The Rocky Mountain LLS chapter has been a fantastic resource for me and my family over the past 6 months.  It is my goal to get as many walkers as possible to join me at Washington Park on September 26^th and to raise LOTS of money for this amazing organization.  (Scotty will be joining us in his stroller, so feel free to bring your kiddos along if you want!)

 I have our team fundraising page finalized and it is a secure site (through LLS) ready to accept both donations and registrations to walk with our team.  Please consider making your tax deductible donation to one of our registered walkers or to our “Go Cells Go” team as a whole.  Each registered walker who raises at least $100 will get a Light the Night Walk t-shirt and a wrist band for free food at the event. 

Thanks again for all of your ongoing support for me and my family as we continue along this journey.  For those interested, here is the link J

Our LLS Light the Night team fundraising page:  http://pages.lightthenight.org/rm/DenverL13/GoCellsGo

From this site you can register to join our team of walkers, donate to the team as a whole or donate to an individual walker.

Oh and for those competitive folks out there…John and I have a friendly competition going on to see who can raise the most money  ;-)  We’ll let ya know who wins! And one more thing…if anyone joins our walking team and raises more money than me, I have a special gift for you!! J

-Chellie

Weight loss program for those that like to do things the hard way

Still chuggin’ right along on the recovery train J  I had my first office visit back at Kaiser with my primary oncologist, Dr. Liel.  She was able to give me the results of my DEXA scan and said reported that my bone density is “a little on the low side” and indicates that I probably have osteopenia…but that its not full blown osteoporosis and that I shouldn’t have to take any bone strengthening meds.  Instead, she thinks that I should be just fine on the current Vitamin D and Calcium supplements that I am already taking.  This is wonderful news as my dentist had warned me that the bone density medications (like Boniva, etc) are very bad for your teeth and that I wanted to avoid having to take them (if at all possible).    Dr. Liel also referred me to an endocrinologist to discuss the hormone issues related to the probable early onset of menopause (due to all the super intensive chemo and totally body radiation pre-transplant).  So I have that appointment next week at the Kaiser office downtown and we will be discussing whether or not to put me back on birth control or artificial hormone replacement therapy.  This certainly wasn’t something that I thought I would be doing at 33 years old, but hey… I am getting this out of the way and will be able to enjoy my “golden years” without having to worry about “the change” J lol

While I was at the clinic seeing Dr. Liel we started talking about the past 2-3 years and everything my body has gone through with fertility medications, pregnancy, c-section delivery, the effects of the leukemia, the toxicity of the chemo & radiation as well as the whole transplant deal.  Dr. Liel kept telling me how great I looked and that she was very pleased to see me doing so well.  As we were talking, it struck me how resilient our bodies are.  We only get one body and mine has been through a whole lot these past few years.  As I continue to get stronger and stronger it is nice to feel like I have my body back.  I am working on losing weight and I’ve lost just over 100 lbs since having Scotty nearly 1 year ago.  Certainly, this recent ordeal isn’t the way I would have wanted to lose the weight but it certainly gave me a “kickstart” and I’m trying to keep that momentum going.  For all of you who read this that might have struggled with your weight…this is the first time in my life that I’ve weighed less than what my driver’s license says (that was a big deal for me when I hit that milestone!). J  I would love to go get a new drivers license but I don’t think I’ll do it till my hair grows out a little bit more. LOL

Aside from doctors appointments, I’ve spent this past week volunteering at my old job.  I’ve been helping them reconcile one of their fundraising events from last month, putting together packets, and stuffing envelopes/packets for a youth art contest.   I have noticed that I am TOTALLY exhausted when I get home from volunteering for a few hours.  I am realizing that Dr. Nash really does know what he’s talking about (hahaha) when it comes to my recovery and being able to return to work.  He keeps saying that I shouldn’t go back to work until I am off my immunosuppressant medication and even then it should probably be part time…so I guess I’m realizing that is going to likely be the reality.  (I’m pretty stubborn and it takes me a while to let things sink in when it doesn’t “go my way”…and this delay in returning to work is finally starting to sink in.)  Oh well, its giving me more time to focus on my family and my ongoing recovery. 

I talked to my Dad earlier this week and he will be coming out to Colorado at the end of next month to join us for the Light the Night walk (fundraiser for the Leukemia & Lymphoma Society – Rocky Mountain Chapter).  I am really looking forward to participating in that and getting to experience the atmosphere at Washington Park that night.  My nurse coordinator from the CBCI clinic said that many of the staff from their office go, so it will be fun to see them outside of work as well J  I know that in my last blog entry I mentioned that I would give more details on the fundraising part of the walk, but I haven’t had a chance to get the link to my fundraising site.  I promise I’ll get it organized and post about it next week! J

Thanks again for all of the continued prayers and support.  I am so blessed to have everyone rooting for me and supporting me on my journey!

-Chellie

Life without pedicures

Its been a while since I updated everyone.  I am now a little more than a week past the milestone mark of Day +100 and still feeling well.  I talked to Dr. Nash last week about the transition back to my primary oncologist and he felt that I was doing well enough for this, so my first appointment back with Dr. Liel at the Kaiser Oncology/Hematology department will be next Tuesday.  I will continue to see Dr. Nash over at the Colorado Blood Cancer Institute every month or so just for continued follow up and both he and Dr. Liel will be in contact about my progress over the next few months.

 

My blood counts continue to improve.  Most markedly, my liver functioning appears to be almost back to normal (woo hoo).  My platelets are very steady at about 250 and this is something that the clinic is very glad to see.  My white blood cell count continues to bounce up and down for no identifiable reason.  I range anywhere from 2.3 to 4.9 (with normal limits being about 4.5-11.0)…so I have a ways to go on that one.  My red blood cell numbers continue to creep up ever so slowly (RBCs are the slowest to recover after transplant is what I have learned).  Dr. Nash told me to expect my RBC counts to be low for several more months (probably till the 6-9 month mark).  Still no results from my bone density scan that I had a while ago.  I have another clinic appointment on Friday, and they expect to have the results when I see them at the end of the week.  On Monday I picked up my retainers from my dentist so that I can keep my teeth from shifting anymore than they already have.  I feel like a teenager again at night when I put them in before bed (major flashbacks to all the orthodontic work I had done years ago)!

I am searching for a local yoga class for cancer survivors (Dr. Gregory at the clinic highly recommended it) but the one I found here in Aurora is dismantling because the yoga instructor is a teacher and she is going back to school.  I’m gonna keep looking around town.  Never done yoga before, but being more flexible never hurt anyone and the idea of being able to try it in a class of other cancer survivors who are at all places in their journeys sounds very inspiring!

 

I have had the opportunity to reconnect with several friends over the past week or so.  We’ve gone for walks together, painted pottery together, and chatted while I stopped by their offices to drop off cookies.  This Friday I get to have lunch (at a non-busy time) with a dear friend who I have missed seeing so much over these past 6 months.  We used to go get lunch and pedicures often but that was all brought to a screeching halt when I was diagnosed because I wasn't able to eat out and definitely couldn't go to get a pedicure (Dr. Nash literally cringed when I asked him about getting a pedicure and said no way) lol.  Nonetheless, it is SO fun to get to see friends in person again.  Text, email, phone and greeting cards were wonderful to keep us connected over the past few months but nothing compares to spending quality time with friends and loved ones!

I am gearing up for the Light the Night walk in September here in Denver at Washington Park.  This is a fundraiser for the local Leukemia and Lymphoma Society (Rocky Mtn. Chapter) and want to invite anyone who is local (or far away & wants to come visit and join us) to walk with us on Thursday September 26^th.  I’ve created a walking team and will include all the info about how to register to walk with us & the link for fundraising for anyone who would like to contribute in my update this weekend.  I should also have the results of my bone density scan so I can share those as well J

-Chellie