Bone Biopsy Naps

These blog updates haven’t been happening as often as I’d intended…sorry about that.  Now that I’m home, I feel like I’m busy with appointments, home IV infusions, napping J, etc.

Things are continuing to go well with my recovery.  I’m feeling well overall.  My rash on my arms is still itchy, bumpy and pinkish red, but its getting better on my neck, upper back & my chest! J  Just gonna keep on, keeping on!

I had my first post-transplant bone marrow biopsy (BMBx) on Wednesday.  All of my previous BMBx had been done at Kaiser & they don’t do conscious sedation for their BMBxs.  Luckily, the Blood Cancer Institute offers sedation for their biopsies so I took them up on it.  Man, it was SOOOO much better.  It still hurt a tiny bit and my hip is sore from it, but it was 10x better than the Kaiser biopsies!  Funny enough, one of my coworker’s SIL went through CBCI for a transplant just like mine about 2 years ago and she HIGHLY recommended sedation EVERY.SINGLE.TIME from now on, since I’ll be having bone marrow biopsies monthly for a while.  I joked with her that I might have to have one of my friends/coworkers write me a letter stating that I have a legit anxiety disorder related to previous unsedated bone marrow biopsies (I honestly think I have developed some serious anxiety).

 

While my mom and I were waiting at the registration desk at the hospital (prior to my biopsy) I got super hot and had to take my fleece jacket off.  As I took my jacket off, the rash on my arms was BRIGHT RED and looked super angry.  As my mom pointed out, I think my anxiety manifest almost like hives and made my rash worse (it got better once we got home and I was able to relax).

  

Sorry for the long delay between updates…I’ll try to be better about writing J  I have another doc appointment tomorrow and hopefully we’ll get the preliminary results from my biopsy earlier this week… (fingers crossed for normal/cancer free results!!!)

-Chellie

Life at home.

Still home and still feeling well.  My counts were down a bit at my appointment on Friday (my ANC dropped about 200 points, but I’m still above 1000 overall, so that is good!)  The NP that we saw at the clinic said that it is somewhat common for counts to kinda drop a bit when they grow too quickly (Kyle’s cells were going gangbusters J)

I have been getting out and walking around the neighborhood early in the morning or late in the afternoon for the past week and its wonderful to get fresh air & enjoy everyone’s nicely manicured yards!  Since I’m not allowed to do any gardening this year, I’m enjoying all of my neighbors flowers!  Definitely looking forward to being able to plant annuals and a vegetable garden again next year!

My home IV fluids got decreased a bit this week, which is good news!  Now instead of infusing a whole liter of fluids I’m down to half a liter (still the same amount of magnesium in there though).  The NP at the clinic also mentioned that if I continue to do well that I might be able to start taking oral magnesium (instead of needing to do it via IV infusion) sometime next month.  That would be awesome because the sooner I can get switched over to all oral meds and get off the IV meds the better.  That will also help me show my doc that I’m doing well and hopefully he’ll give me clearance to go visit my coworkers at work, start driving again, and possibly even return to work by the end of summer/early fall!?!  We’ll see!  I’m optimistic because everything has been going pretty well so far!  My rash is getting better on my neck/upper back.  Its still there on my arms but the topical steroid cream seems to be keeping it under control for the most part.  I’m VERY pleased with this as I’ve been able to avoid oral steroids so far!  WOO HOO

I must say, it is SO nice to be back in my own home and with my family!  My mom and I are enjoying going through recipe books and marking new recipes (and old favorites) to make.  I absolutely love to be in the kitchen baking and I’m looking forward to having her shop for our ingredients and then being able to try new recipes out!  I really missed baking while I was in the hospital and I can't wait to bust out my KitchenAid stand mixer and whip up some new tasty recipes!
-Chellie

Avoiding the crowds

Sorry I haven’t updated the blog in nearly a week.  I’m home and I’ve been enjoying time with my boys and my mom.  I am doing well.  I have clinic appointments 3 times per week where I go in and get blood drawn (to check my counts, my blood chemistry, etc).  On Friday last week during my first appointment at the clinic I had to stay an extra 2 hours for a magnesium infusion because my magnesium level was so low.  Since then I haven’t had to have any extra infusions at the clinic.  A home health RN came to the house and showed me how to do IV infusions here at home, so I do that each afternoon with a bag of electrolytes & 6mg of extra magnesium.  Apparently my magnesium is low because one of the meds that I take (the immunosuppressant) really messes with my blood chemistry (particularly the mag).

 

My skin rash is getting better in some areas and staying about the same in others.  Still haven’t had to have it biopsied, but who know what the doc will say today when I go in to the clinic.  Other than the rash, I am feeling pretty good physically.  I am very tired (just from doing my usual stuff around the house) and I usually need to take 1-2 naps per day just to keep my energy up…but that isn’t too bad! J

 

I am still not supposed to have any visitors or be out in public around crowds until my doc says that my counts are high enough and even then I really shouldn’t be out in crowds.  I have to time my essential errands (bank, pharmacy, etc) to when they will be least crowded.  My mom and I did a good job of this yesterday when we went to the bank (we were the only people in there!) J 

-Chellie 

A message from Scotty

Dear God,

It’s me, Scotty. Thank you for letting my mom come home from the hospital and sending Nana to help care for us. My daddy did a good job, but it’s nice to have other helpers.

Love,

Scott Robert Voss - 7 ½ months

D Day!!

The countdown has begun!  Just a few more hours still I get to walk out of the hospital a “free woman” J  John and I have met with the nutritionist & thoroughly reviewed all of the details of my nutropenic diet.  John picked up all of my prescriptions from the pharmacy & brought them in this morning so that the hospital pharmacist could meet with us & review everything.   John just took a cart full off my stuff down to the car & now we are just sitting around waiting for the doc to write my official discharge orders.  I can’t wait to breathe fresh air for the first time in nearly a month…but most of all I can’t wait to hold my little man!  We will be going straight from the hospital to daycare to pick him up this afternoon J

I am SO excited to be going home this afternoon but with that excitement comes some anxiety.  I sure as heck don’t want to come back to the hospital if I can help it (obviously) and John has prepared the house very well for me coming home.  I just hope that my GVHD rash on my skin can be managed with the topical steroid cream and that I won’t experience any GVHD of the gut (my nurse who did my original discharge education session mentioned that most readmissions are due to GVHD of the gut & not being able to absorb medications adequately.

 

Peace out Presbyterian/St. Luke’s Hospital… I HOPE I NEVER HAVE TO COME BACK TO THE BMT UNIT AGAIN!

-Chellie

Bronco Mania

Discharge is still planned for Thursday afternoon.  Only 2 more “wake ups” till I get to kiss my little man, Scotty!! J  I am still feeling well and keeping my fingers crossed that everything continues to go as planned!  The doc hasn’t come in yet today, so I’ll see what she has to say when she comes in this afternoon.  The “unit discharge planner” stopped by my room this morning and talked about setting up the home health agency for my IV/infusions.  It sounds to me like the “discharge ball” is rolling J

 

Today was a pretty exciting day on the unit.  We had 4 Broncos players come visit!!  They were awesome and so personable!  They thought it was really cool that Kyle was my stem cell donor.  They commented on one of the pictures I have on my wall (Scott with a plush football) & talked about how he could be a future Bronco J  It was really nice to have them come visit.  They were all super tall and a few of them didn’t fit in the yellow gowns that they had to wear because their shoulders are so wide!

Funny how things work.  My nurse today, Laura, will be my nurse for discharge on Thursday.  She is the very first nurse I had back in February at St. Joes when I admitted for my first round of chemotherapy!  I haven’t seen her since that very first day that I admitted to the hospital across the street and now in my last days at this hospital she is my nurse.  We were joking this afternoon that my treatment has come full circle since she was my original admitting nurse and later this week she will be my discharge nurse J 

-Chellie   

The "D" Word!

Despite missing out on some beautiful Denver springtime weather, I had a wonderful weekend.  My ANC continues to climb (was 170, then 271, and this morning it is 453)!  My doc believes I’ll be over 500 tomorrow and possibly close to 800 by the time I discharge later this week.  He said that we are tentatively planning for a discharge on Thursday afternoon!!!!!!!!  I am SO thrilled to simply have a date, let alone get home and hold Scotty and give JP a pat on the head J

If I indeed discharge on Thursday afternoon, then I’ll have an all day clinic appointment on Friday and then my mom arrives in Denver on Saturday morning!  Things are coming together nicely!  The maid service that my SIL gifted us will be coming to the house tomorrow afternoon to clean up and get the house ready for me to come home.  (Thanks Kate!)

I got to walk down to my chest x-ray this morning without my IV pole since my meds have all be converted to pills.  It was AWESOME! J  I still had to wear my “chickie gear” but it felt so nice to walk around and get off the unit even if it was only for 15 minutes!

John has been doing an EXCELLENT job transitioning Scotty to his crib!  The doctor had recommended that Scott not sleep in our room when I get home to ensure that I get a good night’s sleep since my body needs lots of rest to continue to grow all of these new cells.  Scotty had been sleeping in our room in a bassinet since we brought him home from the hospital last fall, but for the past 2 nights he has slept in his crib and has done wonderfully!  We are blessed with a good sleeper and I am so thankful that John has been so diligent about keeping Scotty on a routine for bedtime despite all of the craziness that has been going on for the past 3 months!  What an awesome Dad! J

I am so excited that in 3 days/3 nights I should be home with my boys (if all continues to go well).   Woo Hoo!!

-Chellie