I'm an excellent driver...

Well, it has been another week since my last blog post. Went to see Dr. Nash again yesterday and he continues to be pleased with my progress so far. Today marks Day +56 ( but who's counting, right :). I have been feeling pretty good overall (just a slight headache for the past few days and some morning nausea that usually goes away pretty quickly once I eat some jello or drink some juice when I wake up). My blood counts continue to trend in the right direction, which is awesome! I have another dose of spinal chemo on Thursday June 27th and I have another bone marrow biopsy on Monday July 1st. My BMBX will be at the same hospital that did it last time (with twilight sedation & use of the bone marrow drill...both of which I like very much over the alternatives of Kaisers way of doing things (no sedation and the hand crank tool that they use on their outpatient clinic).

John and Scotty both seem to be on the mend and getting over their colds. John's doc at Kaiser was great when he called and told him that he was sick and that we were worried because I am immunocomprimised due to my transplant. His doc just called in prescriptions right away and didn't even make John come into the office and John was able to start antibiotics right away. I think I have made it through the first (of many, I'm sure) household illnesses unscathed which is very relieving. My mom did an excellent job lysoling (is that a word? It sure is at our house now) all of the door handles, remote controls, light switches, etc to prevent the spread of any germs to me. Thanks Mom!

Dr. Nash still doesn't want me driving :(. My mom has been a great chauffeur, but I feel a bit like a high schooler again not being able to drive. It sure is a lesson in letting go of my independence. Challenging, but doable. I can't wait to go for a joyride once I get my driving privileges back from Dr. Nash (hoping for the end of next month is all continues to go well). I still ask him frequently, even tough I know he still thinks it is too early...I keep asking cuz eventually I will break him and he will finally say yes :) hahaha. Just kidding...I just figure it doesn't hurt to ask and all he can do is say "nope, not yet". Last time I asked he said it wasn't just me it was worried about, but the other people on the road around me (as if to imply I am a bad driver) :). I wanted to quote in my best Rain man imitation "I'm a good driver" but I don't think he would have been amused being the very stoic and serious doc that he is. My mom and I sure got a kick out of it when I said it to her after Dr. Nash left the exam room though :).
-Chellie

Blood brothers

So…this seems to have turned into more of a weekly update now that I’m home.  Went to the clinic again today.  I had my first of 4 spinal chemo treatments early this morning (Doc has ordered 4 rounds post-transplant as a preventative measure).  Same anesthesiologist (Dr. Morris) who did all of my first spinal chemo treatments did my appointment today.  He is amazing and I barely felt a thing (just the numbing medication that he used at the very beginning of the procedure and when he finally pulled out the needle at the very end.  All in all, not a big deal.

I also met with Dr. Nash (my transplant doc) this morning.  He continues to be pleased with my progress.  He is now pretty sure that my rash on my arms is not GVHD and he isn’t sure if it’s a medication reaction or something else (excema possibly?) and he mentioned today that he is thinking about referring me to a dermatologist to get it looked at by a specialist.  We’ll see what happens next week.

 

Super interesting/fun news…when they did the labs on my bone marrow from the last biopsy they also did a chimerism test.  “Chimera” is a mythical creature that is a hybrid of different animals (for those who are interested…go google “Chimera” for cool pictures of the mythical creature :) Hematology/Oncology docs use this term to refer to the measurement of “how much of my blood is mine & how much is my donors”.  The nurses have been telling me since the biopsy that the first time they draw chimerism labs that people are usually between 50-80% donor blood cells and not to expect much higher than that.  Well, my donor cells are apparently over-achievers because my first chimerism results came back as 100% XY cells meaning that all of my bone marrow is “brother-blood” now!  J Pretty cool!

Here at home I’m surrounded by “sickies” (as my brother calls them).  Both John and Scotty are sick (poor guys) and I’m not allowed to be around either of them.  This is Scotty’s first cold (not bad for being 8 months old) and I’m afraid that he’s already shared his germs with his daddy. Thankfully we have 1 extra bedroom and John is sleeping in it (downstairs) until he feels better and can return to the master bedroom with me.  Good thing my mom is here helping out because I’m not allowed to care for Scotty or for John because of my compromised immune system.  She has been an amazing help!  I’m praying that I don’t catch whatever the boys have… I don’t want to end back up in the hospital!!!

-Chellie

A pink slip and the new normal

Good news/Bad news:  Good news first… My office visit at the clinic went well and the molecular results of my BMBX from last week came back clean/negative for any MLL genetic mutations (very good news).  Bad news… My boss, Mike and I had a couple of phone conversations towards the end of last week and he informed me that they could no longer keep my position open for me and that they were having to let me go and needed to rehire the position in order to keep up with the needs of the agency.  Since last week I’ve been struggling with the loss of my job (I have never been let go or fired from a job in my entire life) and I didn’t want to tell anyone besides my immediate family because I wanted to talk to my coworkers first.  This afternoon I joined them for their weekly team meeting and was able to talk to them about being let go from my job and what was going on.  It was so hard (my boss had to do most of it because I was on the verge of tears the entire time).  Thankfully my coworkers are all friends and I know we won’t lose touch.  (They can’t get rid of me that easily) J ha ha ha.

It makes me so sad because I really LOVE my coworkers (we had an AWESOME team) and I VERY much enjoy doing emergency evaluations.  Hearing that I won’t be able to go back to my job really kinda took the wind out of my sails over the past weekend.  I think its because until this most recent development I kinda just felt like my life was on “hold” while I went through the recovery process.  It still seemed like I would be able to just “re-enter” my life outside the house and things would be just like they used to be.  Losing my job was a jolt to reality that things are going to be different even once I’m able to return back to work.  I won’t be able to go back to “my” office (went in and boxed it all up with John this past Saturday and brought everything home and put in the basement for now).  I’ll have to apply for positions again and find something else because I can’t go back to doing ES work until I have all of my vaccinations (few more years).   I’m not angry at all…just sad.   I completely understand the agency’s needs to refill the position and I really hope to be able to return to work for them when Dr. Nash gives me clearance to work again!  I know that the call was a very difficult one for my boss to make and I appreciate him calling me instead of having HR call me.  He reassured me that once I’m feeling better and able to work again he’ll fight to help me find a position again at the agency that will be a good match for me.  I’m hoping that this fall I’ll be able to at least go back part-time and do something with the agency’s intake/access departments and/or help them with some other new/exciting projects that are coming down the line later this year.

 

In the meantime, I’ve applied for long-term disability.  It sounds funny to me because I’m not looking at it as “long-term” and certainly look forward to getting back into the mental health field as soon as I’m able to!  When I called the LTD caseworker last week my status was pending and my boss today that he thought he’d heard that I’d been approved…so we’ll see.  Nonetheless that little bit of extra money will help us pay the bills and keep us from having to dip into our emergency fund/saving too much over the next few months. J  

-Chellie

The road to recovery

Things continue to go well!  I met with my doctor yesterday and he seemed pleased with my progress.  He is a very stoic guy and he even joked around and cracked a few smiles during my appointment yesterday which I’d never seen before!  My ANC yesterday was 2091!!  Woo hoo and my total WBC count is 4.1 (normal range is 4.5 -10), so I am getting close to the normal range on that specific count! J  The other good news is that Dr. Nash re-evaluated my rash on my arms and he doesn't think its GVHD (at least not the typical presentation of skin GVHD) and he said it looks as though it might be some sort of reaction to one/many of the meds that I’m on.  So, that is good news!  I also got the preliminary results back from my bone marrow biopsy last week and so far everything looks good!!  I am still waiting on the molecular results (to look for the mutated gene that they found in my cells originally, back in February) and hopefully those results will be clean too! J

I am feeling more energy and able to walk about 2 miles with my mom each morning (before the sun comes out & it gets hot).  I was never a fan of heat, but after the transplant I’m tolerating the heat even less.  It was really funny that this topic came up in the clinic waiting room yesterday and two other patients chimed in and mentioned the same thing!

 

Still not allowed to travel outside of Denver and still not allowed to drive.  I feel like a teenager again asking my mom to take me places! Lol  Today we have a few errands to run and then back to the house early this afternoon so I can get my IV infusion started.  My doctor started me on oral magnesium pills (I will start with 1 per day and work my way up to 12 magnesium pills per day) but once I can work my way up to 12 then I should be able to get rid of the home IV infusions! J  Looking forward to that!!!

I got to have one of my favorite dinners last night, homemade BBQ Chicken Pizza.  I had been thinking about it since I was in the hospital and its one thing that my taste buds “recognize” and it still tastes the same!   It is so weird how my taste buds are kinda “dulled” for the most part but BBQ Chicken Pizza was a hit! J

-Chellie

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