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

What's that sound? Oh yeah, silence...

Day+ 100!!!! Woo hoo! The day has finally come. When I first started the transplant process it seemed like 100 days seemed like forever! Reflecting back it has gone pretty quickly. I am home alone for the first time today (My mom is down in Pagosa Springs and John is at work). I don’t think I’ve spent more than a few hours alone for the past 5 months!

I miss my mom already. How many other adults get to spend 2.5 months with their mom? Despite the circumstances, we had a really fun summer together. My Mom is a pretty cool lady! :-) She was so helpful around the house, driving me to all my appointments and taking notes, helping with Scotty and keeping me company. Its going to be quite an adjustment not having her to hang out with during the day. Even though I am now past Day +100, I am still not really supposed to be out in crowded public places or able to do anything really fun because I am still on my immunosuppressant medication. So, that means l will continue to spend lots of time at the house and running quick errands during non-busy times. Still no movie theaters, sporting events, or work. I am trying to come up with a schedule now that I’m home alone most of the day. I am really hoping to do 10-15 hrs of volunteer work for the mental health agency as well as study for my EPPP, get in a 2 mile walk or elliptical each day (depending on the weather), and organizing/typing up my grandmother’s recipes.

I had my 3 month BMBX on Thursday and at my appointment on Friday we discussed the initial results. Again, so far, so good. Initial results show no signs of leukemia and we are just waiting on the molecular results (should hear later this week or early next week). Then I am “free” of BMBX until late October when I get my 6 month BMBX and follow-up appointment at the clinic. I think I should be able to return to my primary oncologist at Kaiser pretty soon! :-)

Tomorrow I have a DEXA scan at Kaiser downtown to check my bone density (fingers crossed that I don’t have any major/permanent bone density loss from the chemo/radiation!

That’s it for now. All is “good in the ‘hood”. Next big milestone is the 6 month mark!

-Chellie

The importance of teeth

Survived another bone marrow biopsy this afternoon. Glad it's over with and hopefully I will get a break for a few months before I have to do another one at 6 months post transplant. I saw one of the other docs at the clinic earlier this week and mentioned to her that my teeth are shifting. She said that it can happen post transplant because all of the chemo and radiation have likely put me into early menopause and that there can be major issues with bone density like women have much later in life. So, she ordered a DEXA scan to measure my bone density as she was concerned that my teeth shifting might be due to bone density loss in my jaw.

Having braces twice as a youngster and being the daughter and the niece of dental assistants, having straight teeth is something very important to me...so when I noticed that my teeth were shifting and it freaked me out a bit. The oncologist referred me to my dentist for an urgent consult. We did panoramic X-rays and the nice thing is that we had a baseline to compare with because I had to have a dental clearance prior to transplant. Good news is that my amazing dentist didn't see any change in the roots of my teeth or bone loss in my jaw, so I won't have to take any immediate measures regarding more meds for bone strength and instead I should be able to just supplement with extra calcium and vitamin D. The oncologist had measured me vitamin D level last week and it was super low, but we are fixing that with supplementation. In order to keep my teeth from shifting anymore my dentist took impressions and is getting some retainers/positioners made for me to wear while I sleep. :).

Tomorrow is my Day +100 appointment (even though day 100 is actually on Sunday). I will meet with Dr. Nash and we will go over all of the recent tests I have done and we will see what he thinks about me returning to my primary oncologist at Kaiser with periodic follow ups with CBCI.

My mom leaves on Saturday to head down to their cabin in Pagosa for 2 weeks before she heads back to California to start her school year. I am really going to miss her. How often do you get to spend 2 1/2 months straight with your mom when you are an adult. We have had so much fun hanging out this summer and she has been SO incredibly helpful over the past several months. It's going to be sad not to have her here to hang out with (since I can't really go out and do much with friends). I have some "feelers" out to find some projects and things to keep me busy. I am hoping to volunteer for the local mental health agency in a capacity that I can stay connected but not have any client contact until my docs say I am okay to do that. Additionally, I am hoping to do some volunteer work for the local Leukemia & Lymphoma society. Lastly, I will be studying for the EPPP (licensure exam for my doctoral level license). My doc has told me several times that I really shouldn't return to work until I am completely off my immunosuppressant medications and even then I need to severely limit any exposure to patients due to my "baby immune system". So, in the meantime I am going to try and fill up my days with lots of volunteer work, studying, continued doctor appointments, and of course just continuing to recover :)
-Chellie