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

The light at the end of the tunnel!

The countdown has begun.  Day 100 is only 11 days away!  I had my first appointment with the CBCI clinic “Long Term Care” provider earlier this week.  She went over all of our long-term “life after transplant” questions and she will be one of the providers that I see every few months to check in and make sure things are going well.  It’s crazy to think that I’m becoming a “short timer” at the clinic.  I will likely transition back to my primary oncologist, Dr. Liel at Kaiser in August and then I’ll just attend appointments with Dr. Nash at the transplant clinic periodically.  This summer has flown by and as I was reflecting yesterday, I continue to be so thankful that everything has gone according to plan.  Everyone behind the scenes at Kaiser (transplant coordinator) & CBCI, all my docs collaborating with one another, and the life-saving donation of cells from my little bro.  I truly am SO incredibly blessed.

As I near my “Day 100” appointment, I am doing a bunch of tests so that my transplant doc can compare my results to the pre-transplant tests.  My mom and I will be traveling downtown today (we have appointments down there every day this week!) for a pulmonary function test.  This is something that Dr. Nash is very interested in because if you recall from my blog posts pre-transplant he got very concerned about my pulmonary function & history of asthma and we had to delay my admission to the hospital by a few days so that the radiation clinic could create lung shields to protect my little lungs.  I am very interested to see what the results are this time around (fingers crossed).  I should find out on Aug 2^nd at my clinic appointment when we do the “3 month review”.  Next week I have my 3-month bone marrow biopsy.  There was some serious drama yesterday around whether or not Kaiser was going to authorize sedation for my BMBX (and I admit that I was totally freaked out when they called me and said that they weren’t sure they could get the sedation authorized).  Thankfully my Kaiser transplant nurse coordinator kicked some butt and got it authorized this time.  She also said she couldn’t promise anything but she would try to do it again for me when I am due for my 6 month BMBX this fall.

Aside from the pulmonary function test this afternoon, I have spinal chemo bright and early tomorrow morning (7:30am) and a doc appt on Friday.  TOMORROW SHOULD BE MY VERY LAST DAY OF CHEMO!!!  To top it off, my mom’s birthday is tomorrow…so we have 2 big things to celebrate tomorrow J  YIPEE!

-Chellie

Joyriding

Final results are back from my BMBX 3 weeks ago and everything looks good! Yay! Sorry it's been a while since I updated the blog...I have been getting out more :) hahaha. Since my last update I have several exciting pieces of news. My mom was able to spend a weekend in Pagosa Springs which want that I got to stay home with my boys and just have some "family time"...just me and my boys. We decided to take a quick road trip down to Colorado Springs on Saturday. This was my first trip out of the Denver Metro area in nearly 14 weeks! (Until now I had been told by my doc that I needed to stay within 45 minutes of the hospital/clinic at all time just in case something happened and I needed to come in for a fever/infection/etc). So, on Saturday we loaded Scotty up in the car and we drove down to Colorado Springs. We went to Garden of the Gods and had lunch at one of John's childhood favorite restaurants, Fargo's Pizza.

This was my first time eating out at a restaurant since April and I must say its weird to eat out. I am not supposed to have any fresh fruits or veggies unless I wash them at home myself, so that means no fresh fruits or veggies at restaurants (definitely no salads, but not even lemon in my water, a slice of tomato on my pizza, etc.). Another thing is that they don't want me drinking soda from a soda fountain or soda gun at a restaurant...so I have to get water if I go anywhere. Lastly, my food isn't supposed to sit under any heat lamps so I have to be careful that anywhere I go that my meal is "cooked to order" and brought out to me immediately. It is just a bit weird to me because I used to be a very "low maintenance" patron when we went out to eat but now I will have to explain my dietary restrictions to the waiter and hope that they understand and can help me out. I used to love going out to dinner but now I have lots of anxiety around it because I'm not sure that I trust complete strangers to prep my food and keep me from getting sick (sad). I have had such a good track record so far with no illness/major issues post transplant, and I don't want to have to go back in for something like food contamination that makes me sick! The investigative reports and health dept. inspections that they run on the evening news every once in a while certainly don't help me feel better about eating out. Good news is we will probably save quite a bit of money by eating at home for the next 6 months or so (until I am off my immunosuppressant medications). :)

While i am feeling very good physically, this week has been tough for me emotionally because I am away from my old coworkers and this is a week that is very emotionally charged for Aurora and the community that we served and we live in. I would love to be at work supporting clients, staff and community members through this week as the anniversary of the theater shooting comes up. I really want to be able to volunteer at some of the community memorial events but I am still not supposed to be around crowds of people. :(. I know my coworkers will do an amazing job supporting everyone who calls the crisis line (just like we did last year in the aftermath of the shootings)...just wish I could be there with them to help out. I will just have to wait and do it next year.

On a more fun/upbeat note, I got to drive for the first time in over 3 months on Monday!!! It's so funny how much we take for granted being able to get in the car and go wherever we want, when we want. You don't realize (until you can't drive), how much freedom and independence it provides. So watch out Denver/Aurora, I am back behind the wheel! :) Dr. Nash told me that I am not allowed to drive alone yet and that I need to have a caretaker with me for the first few weeks while I drive again in case I get tired and need to have the other person take over for me. (They are still worried about fatigue). I feel like a kid with their learners permit again. My mom and I were joking that we should keep a logbook and show it to Dr. Nash at Day +100 so he can give me my "all clear" to drive alone. So far I have driven in inclement weather (super soaker rain/thunderstorm) and crazy construction/traffic on 225. I think I am ready to "have my license back" so to speak :)

As I get closer and closer to Day +100 I will get some follow up tests done. Another BMBX (geez, I feel like I JUST had one), more intensive bloodwork, and possibly some pulmonary and cardiac function tests to see how things look (compared to my baseline test prior to transplant) since the chemo and radiation can affect these things. I will report back as we learn the results :)
-Chellie

Day 70

Happy 4^th of July.  Hope you and your family get to enjoy some BBQ and fireworks tonight.  We are “laying low” today as I am still not supposed to be around crowds and BBQ food is on my list of “no no’s” still.  Instead, my mom and I are home with Scotty (daycare is closed today and we don’t have our usual Thursday appointment at the clinic because they are closed too).  John decided to work today so that he could take next Thursday off instead and drive me to my spinal chemo and doc appointment while my mom spends a much deserved weekend down at the cabin in Pagosa Springs J

Today we are making cookies (cranberry & white chocolate chip cookies to be exact).  We went for a 1.5 mile walk around the neighborhood this morning and now we are just kinda hanging out waiting for Scotty to decide if he’s going to bless us with a nap or not (this kid is just not really a “napper” these days)…but at least he sleeps through the night.  I’ll take that over napping during the day, hands down!

I had another bone marrow biopsy on Monday.  Same NP that did my last biopsy did this one.  I got twilight sedation and she used the drill again.  Still hurt a bit and I still get super anxious, but MUCH better than the first 3 biopsies I did over at Kaiser.  No results back from the biopsy yet, should get some of the preliminary results back tomorrow at our afternoon appointment at the clinic.  I will post of Facebook tomorrow night once we hear back from the doc about the results J

My numbers continue to progress in the right direction.  I’ve been having some more symptoms over the past week L.  Threw up all of my evening meds on Monday (yuck).  I’ve been taking the anti-nausea medication preventatively since then…but the anti-nausea meds make me super drowsy/tired.  Not a side effect that I’m super fond of, but as my mom said “you’d rather be tired than throw up, right?” (for sure!)  This is just a little “speedbump” in my recovery process though and I’m gonna continue to just press forward and make do.  I am “Day 70” as of tomorrow…which means I’m just over 2/3rds of the way done with my first 100 days! J

-Chellie

A round of immunosuppressant shots for everyone bartender!

Day 63 and still going well. J  Had my 2^nd dose of spinal chemo yesterday with Dr. Morris and an appointment with Dr. Nash in the afternoon.  Both docs were pleased with how everything is going and Dr. Nash even said that things are going well enough that he can proceed with the protocol for tapering my immunosuppressant medication.  He said that if things continue to go well, I might be able to be off the immunosuppressant medication by 6 months post transplant! That would mean that I could finally go out in public and while I would still have to be careful not to be around “sickies” I could do more fun things.  As much as I LOVE being home, I would really like to be able to go out and do more things (movies, shopping, lunch & pedicure with a friend, take Scotty to the Denver Zoo, go to the pool to exercise, etc).  I’m trying to be patient (but I was SO excited to hear that I might be off the immunosuppressant by the holidays!!!

Each “step” down on the med will be 20% of the dosage.  I was already on the lowest dose of pill form of the immunosuppressant medication so now I have to take liquid and use a teeny tiny syringe to measure out 8cc’s of medication when I take it twice a day.  The liquid is super bitter so I mix it with really tart yummy lemonade in a shot glass & shoot it and chase it with Gatorade or OJ.  I am also up to 4 magnesium pills per day, getting ready to increase to 5 pills per day.  Once I’m up to 8-12 pills per day, I should be able to stop needing the IV magnesium infusions.  The nurse that we saw at the clinic yesterday also told me that some patients who are doing very well get their central lines taken out just after Day 100.  I REALLY hope that is the case because I would really like to have it gone.  Don’t get me wrong, it has served me well and its been awesome not to have to get IV’s placed for infusions and blood draws multiple times per week, but I’m tired of it and I would love to know that I don’t have anything foreign sticking out of my chest anymore. J

On a fun note, my eyelashes and my eyebrows are starting to grow back a tiny bit!  I have little tiny baby eyelashes and apparently Kyle gave me some of his “eyebrow cells” because my eyebrows look like they are growing to come in very dark and thick (I anticipate a trip to the salon as soon as Dr. Nash tells me its okay) J lol.  Still haven’t noticed any hair growing on my head yet, but the fact that other things are starting to come back is exciting!!!

I am also getting ready to register my fundraising/walking team for the Rocky Mountain Chapter of the Leukemia and Lymphoma Society’s “Light the Night” walk at Washington Park in September.  We are still trying to come up with a creative name for our team (feel free to email me with any suggestions)!  I would absolutely love for anyone here in the Metro area to join us for the walk on September 26^th (a Thursday evening).  The LLS has been incredibly helpful to us over the past few months (providing literature, connecting me with fellow leukemia patients who have been through the treatment and stem cell transplant process, etc).  We would really like to help them fundraise as they contribute lots of funding to new & ongoing leukemia research and are an amazing resource for blood cancer patients!
-Chellie