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