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 

Mom...!, Kyle is making me itch again...!

Oh my goodness…where do I start?  My ANC this morning was 130!!  We are officially in the triple digits!  I want to shout it from the roof tops.  WOO HOO.  Just gotta keep chuggin along…baby steps.  I also had my first real meal this afternoon.  I had oatmeal and yogurt for breakfast, totally forgot about lunch, and ordered pasta for dinner.  It was terrible but I managed to eat a small portion of it.  First real food in recent memory! J  I still have very little appetite and feel full very quickly but at least my mouth is healing and it doesn’t hurt to eat today! J

Best news yet: (drumroll please)…. The doc used the “d” word for the first time yesterday!  He just casually slipped it in the conversation we were having and I felt like I was in a cartoon where you have all the sound effects and in my head I heard the sound of tires dragging on the street as a car comes screeching to a quick stop.  When he stopped talking he asked me if I had any questions and I said “yep, did I hear you say discharge sometime next week if all goes well?”.  He smiled coyly and said, “you caught that huh?” and then laughed.   Here on the unit, the nurses do 3 “discharge education sessions” and I got my first of 3 sessions with my nurse yesterday who has been working on the BMT unit for 18 years.  She was awesome to explain everything to me, answer all my questions, etc.  Part of the discharge education is how to clean my central line & flush the triple lines.  The entire time I’ve been here, the nurses had been doing it for me, but today, for the first time, I got to do the cleaning while my nurse watched me.  30 seconds (or 2 times singing the alphabet song) of “vigorous scrubbing” with a special q-tip thing that has antimicrobial stuff on it.  My nurse said I did an excellent job J  Rock on!  I have 2 more education sessions (going over the same stuff) and John will need to attend one of them so we are hoping we can do it this weekend when he comes to visit)!

 

Other good news is that we’ve been able to switch my immunosuppressant meds to oral (instead of IV) now that my mouth/throat are healing.  They also switched back all of my other meds (that I’d been getting via IV since my mouth hurt so bad) and they are all oral now as well.  I was able to take everything via pill today (except my magnesium & daily “banana bag” of fluids).  Nurse said she is pretty sure I’ll go home on IV meds & that a home health nurse will have to come to the house each day to help with this, but I’ll take that over being stuck in the hospital anyday!!)

With my ANC counts starting to slowly creep up I’m also starting to experience some GVHD symptoms as Ky’s cells are working hard to kick start the production of my new system.  I’ve got itchy/rashy spots on the back of my hands, my shoulders, my neck and my ears.  The doc said this is common & that GVHD on the skin usually shows up in areas that are more damaged by the sun (previous sunburn areas, etc).  He instructed me to use a special steroid cream on the little spots to see if we can keep them under control.  If not then he’ll “switch to the big guns” and we’ll do oral steroids (which I am hoping to avoid if at all possible because they wreak havoc on my body with raising my blood sugars super high and cause puffy/swelling of my face, but we’ll see).  Fingers crossed we can manage the GVHD with the steroid cream for now!

So, we’ll keep an eye on my counts and my GVHD symptoms and if all goes well then we have a very tentative discharge for the end of next week or early next weekend.  HOLY MOLY, there is finally a light at the end of the tunnel! J

-Chellie

Life in the joint - guest blog

Guest blogger Johnny V. back again by popular demand. I took today off so I could bring Chellie some supplies (life in the joint is tough) and visit with her for awhile. She took her last dose of methotrexate yesterday so we are hopeful that her mouth and throat will start feeling better soon. The doctors thought it best to bump up the dosage on her fentanyl in order to ease the pain and make "eating" more bearable. Eating is a relative term as her diet continues to consist of ensure, milkshakes, popsicles, and anything cold and soft.

Chellie has also been experiencing some nausea as an added bonus to the pain and fatigue. Thanks chemo! She is handling it like a trooper though and has thus far remained vomit free since day three. Actually I was just told that she yakked yesterday but I am leaving it in cause I like the rhyme. Despite the side effects, Chellie remains focused on her goal of getting out of here in about 9 days. Go cells go!

Dad, Scotty, and JP are muddling through each week and enjoy the occasional weekend reprieve from John's mom who is a huge help. We will be celebrating Father's Day this weekend (we decided to switch with Mothers Day) by going out to a restaurant and seeing how long Scotty can keep his cool in public. Chellie thinks I should pay in advance and be prepared to bail before ever getting my food but I have faith in the little man. With the way the ladies swoon over him I doubt I will have any trouble getting a volunteer to hold him while I eat(lol).

Zzzzzzz

Today has been good (and its only 11am)!  My ANC is up to 76 this morning.  I also had my first “real meal” (non-ensure/popsicle) in what has been nearly a week!  I was able to get down some oatmeal, a yogurt and an applesauce!  All still super soft food, but hey…progress is progress! J

The NP who works with my doc came in to see me this morning and said that they want to test me for a virus that has been spreading around the hospital & specifically this unit.  I have had a stuffy nose for the past 2 days and everytime I forget (was told not to blow my nose) and I blow it without thinking ahead of time it triggers me to get a nose bleed.  So the respiratory therapist should be in later this morning.  Apparently they will spray some saline up my nose & then collect what drips out (eww) and test my sample for the virus.  I think this is what Kyle had to do while he was here in order to come visit me & his test was clear (but I remember him saying that the actual process of being tested was rather uncomfortable).  Not looking forward to the “water-boarding” feeling, but at least it is not another bone marrow biopsy (at least I have a few more weeks till I have to do that again) J

I had the best night’s sleep in the hospital that I’ve had my entire stay so far, last night.  Apparently the combination of my pain medication patch & 0.5mg of Ativan does the trick to knock me out (even with nurses coming into my room in the middle of the night, my IV machine that is super noisy & all the bells/alarms that go off in the unit).  I was OUT last night and woke up feeling so much more rested!

 

My mouth sores are just starting to heal which is awesome!!  My throat is still sore but I’m able to take pills now (with super icy water to numb up my throat).  The nurse thinks that they may be able to get most of my meds over to pill form and free me from my IV a couple of times per day (I CAN’T WAIT!!)

Last but not least, a shout out to my amazing dad who is celebrating a birthday today!  Happy Birthday Dad!!

-Chellie  

Waiting for progress

Today was a pretty good day overall.  I feel like I’m making progress on my treatment plan even if I am not seeing evidence of it with my ANC results yet.  This afternoon I got my last dose of Methotrexate (a chemotherapy drug used to help prevent graft vs. host disease (GVHD).  I have all the “toxic” stuff behind me now.  I also had enough energy to stand during part of my shower this afternoon (I’ve been so weak I’d been sitting down for about the past week).  Funny that I would have never thought this would be such exciting news but I was so pleased by this I thought I’d share my good news with you J

Doc came by this morning and said that “everything looks good on paper” and that I seem to be tolerating everything pretty well…and now we just wait for my cells to take up shop & start working.  He said we will most likely see some upward progress in my ANC results by late this week.  GO CELLS GO!!!  The doc also reassured me that my mouth and throat ulcers will start to heal as my ANC goes up and that I’ll probably know I’m on the upward trend before the ANC numbers actually show it.  I am SO ready to have my mouth feel better…my diet of Vanilla Ensure and Strawberry popsicles is getting sorta monotonous J

-Chellie 

The ANC Roller Coaster

Its “chest x-ray Monday” here on the unit.  I didn’t have the energy to walk to radiology this morning (didn’t sleep well last night at all) so I went in a wheelchair. L  The transport lady kept hitting me in the back with my IV pump so I think I’m either going to ask for a different transport lady (or better yet, hopefully by next Monday I’ll have enough energy to make it downstairs to Radiology).

I decided that the oxycodone pills I’d been taking weren’t cutting it for the mouthpain so my doc said he wanted to have me try a fentanyl (spelling) pain patch.  They put it on me around 1130 and its supposed to absorb through my skin (instead of my IV).  It gets changed every 3 days.  I’m hopeful that it will do the trick and that I’ll only need this one patch and by the time Thursday rolls around I won’t need it anymore! 

My ANC yesterday jumped to 21 (yay for double digits) but this morning it was back down to 6 L  My doc and the nurses keep telling me that we should see some upward trending in my ANC by the end of the week (fingers crossed).  I would LOVE to see 3-4 days of positive trend before I will feel comfortable with the fact that I’m actually increasing and not simply ping-ponging around at the same range (hope that makes sense).  It would be a fun thing to be able to call my dad later this week on his birthday & let him know that things are starting to take off as far as my ANC goes! J

This week is Nurse Appreciation week, so I’ll be working on making a card for my nurses (old school style where you cut the letters/words out of old magazines) since that is what I have available in my room!  I would love to be able to bring them some goodies (cupcakes or cookies or something) but maybe once I get home and back to my kitchen.    I can’t wait to get back home to my kitchen.  I miss cooking for my family and baking for my coworkers!

-Chellie

Rock'in out to the IV pump

Just a quick update today…My ANC is still in the single digits.  I am at 8 today.  My RBCs are getting low again (despite my transfusion 2 days ago) and my nurse thinks I’ll need another transfusion tomorrow morning once they recheck me.  The biggest side effect of the low RBC count is that I’m SO tired! I was only able to walk 20 lengths of the hall today cuz it wore me out so quickly.

Last night they started a new IV pump that can pump 6 different meds into my line at a time.  They decided to do this so that they don’t have to worry about risking me getting an infection as they had been constantly changing tubing and exposing me to potential problems.  So this new IV pump is in addition to my regular pump (cuz some meds can’t go through the “combo pump”.  The only thing about it that annoys me is that its LOUD.  It sounds like the “old days” when you’d rewind a cassette tape and it would hit the end and make that clicking sound.  This pump makes that noise every 5 seconds.  I’m getting used to it now, but I had to use earplugs last night in order to fall asleep cuz it was driving me nuts J lol

Other than feeling super tired, not much else is going on.  I’ll report back on Monday.  Have a great weekend!

-Chellie

Magic Mouthwash

Exactly 1 week since transplant.  Yesterday my counts were really low and I got 2 units of red blood cells and a bag of platelets.  I’ve said it again, and I’ll say it every time…thank goodness for all of those generous people out there who donate blood regularly! J  Just when I thought my ANC couldn’t get any lower than before (I was at 6 earlier this week)…this morning my nurse said I’m at 4.  It can pretty much only go up from here!  I have a little bit more energy today since I got the blood products yesterday, a welcome change!  For the first time in the past few days I only took 2 naps today (was taking 3-4 earlier).

While I was walking last night I heard the nurses talking about how “room 6” was getting his cells this afternoon.  I saw the big cryo-container sitting in the hall during my walk this afternoon…so “Happy Re-birthday” to the guy in Rm 6 down the hall! J

The nurse brought me in some new stuff yesterday to help my mouth ulcers.  They call it “magic mouthwash” and it has lidocaine (spelling?) in it to help numb my mouth so I can eat.  At first I was kind of skeptical…just the name alone reminded me of “magic brownies” but the nurse assured me there was no THC in the mouthwash J lol  I’ve only used it once cuz it tastes kinda grody, but it is effective and I won’t hesitate to keep using it if my mouth gets worse.

  

Hope everyone has a wonderful weekend.  Obviously I’m not going anywhere, but some of my amazing coworkers will be running the Diva Dash up in Boulder and their team shirts say “Chellie’s Chicks” J  I will be thinking about them tomorrow morning….love those girls and can’t wait to see the pictures!

 On a totally unrelated note:  Please send prayers out for the firefighters and everyone working so hard to contain the wildfire just southwest of my hometown (Camarillo, CA).  Hope they get it contained very soon!

-Chellie  

If it walks like a duck...

John came to visit today J  I have the BEST HUSBAND ever.  I told him I missed him and that I needed to see him soon and he didn’t hesitate to take the day off, drive downtown in the snow & hangout in my room with me (even though I wasn’t feeling well and probably wasn’t too entertaining/fun to be around).  My mouth ulcers from the chemo are starting to get worse L  They feel like canker sores and right now are on the underside of my tongue and in my throat.  The nurses and docs have been trying to push higher dose pain meds for the past 2 days and I’d been trying just to get by with Tylenol but today I decided that I’ll submit to the “pill pushers” and I’ll try some oxycodone.  The doc said that the Tylenol isn’t enough to manage the pain and he recommended a Fentynal (spelling?) pain med pump that I can manage myself…hopefully it won’t get to that point, but after much encouragement from John I’m willing to go there if I need to.  (Maybe they can just “gork” me with pain meds and the next 2-3 weeks in the hospital will just fly by? J lol).

 

I am in a good mood tonight because the “special” menu item on the hospital room service is “Ravioli with Marinara”.  There is one special item on the menu each day of the week and I’ve tried all of them by this point.  The rest of them aren’t worth the pain it causes to chew them at this point (sad but true) but this is one that I’m looking forward to.  Simple pleasures.  J  I find it funny because food has always been my “issue” and I do admit that I like to eat…but these days, not so much!! My nurse a few days ago said that one of the things that helps the cells grow is eating protein, so I’m doing my very best to get lots of non-fat dairy protein (yogurts and skim milk) and meal replacement shakes that are full of extra protein since the idea of eating meat right now makes me grimace (definitely not worth all the chewing at this point!)   Here at the hospital you dial “3663” or “FOOD” to request your meals…every time I dial it I giggle.  For some reason I think its hilarious.  It seems very caveman like to me for some reason.

 

Just when I thought my ANC couldn’t get any lower (it was 22 yesterday), this morning my nurse told me I was at a whopping 6!  I wear a mask, gloves, and a smock/gown type thing anytime I leave my room (for my own protection).  The hospital calls this “contact precautions” for anyone who is “immunocompromised”.  When I walk the hall each day I am all decked out in this stuff.  One of the masks that they have available is orange and looks like a duck bill.  I hadn’t worn one until yesterday (they were out of the regular yellow masks) and its hilarious.  Us (patients) look like little ducklings or chickies (with our orange masks & yellow gowns and “chick fuzz hairdos” from the chemo) dragging around our IV poles as we walk up & down the 100 ft. hallway.  I got one of the nurses to take my picture of my “chickie gear” today.  I posed with the stuffed chick that my friend Mary Ann dropped off for me at the hospital last week.  

The nurses got a good giggle out of it J

-Chellie