Tapering Meds and prepping for re-immunizations

Met with Dr. Nash and the Long-term follow-up provider at the clinic yesterday. We went over all of my 1 year post transplant test results and also talked about the plan for the next 6 months. As I said last time, the BMBX results were all good, my bone and lung scans were both the same as last time (good news that nothing has changed). Yesterday I learned that my immunoglobulin levels are very low but this is something that is totally treatable. So, I will be going into the Kaiser infusion center once a month to get IVIG infusions. This should help boost my immune system a bit.

Dr. Nash is also looking to start tapering my 2nd immunosuppressant medication (Siralimus). We are going to do it slowly and monitor my levels weekly to see how it goes. Once I can get off of this second immunosuppressant (a couple more weeks if everything goes according to plan and no GVHD symptoms pop up), Dr. Nash believes it would be a good time to start my re-immunizations!!! I am super excited about this (even though it is a year long process) because it will mean that I will be that much closer to being able to safely be out in public places and get back to my previous line of work! :). Sounds like I will start with my first round of shots in late June or early July and then have another round about 2 months after that. Then 1 more round a year after that, but between the 2 month and 1 year vaccinations they think that I should be able to get back out there for most things (see clients in the office, go to the zoo with Scott, etc). No ERs for work till the 1 yr vaccinations, but every round is one step closer! :)

We are now also actively working on getting me off the daily IV infusions. This week we are holding the fluids and then I will do some extra blood work on Thursday to see where my levels are without the IV supplements...if I can maintain normal magnesium, potassium, and BUN levels (electrolytes and hydration are the biggest issues) then we should be able to stop the fluids. Then I will just have to wait till Dr. Nash says it is okay to get rid of this darn PICC line in my arm! I am really hoping that it will be sometime before the summer, but we'll see. I have learned my lesson with asking to get my lines out early (every time I have done his, I have ended up needing line access again and had to get another one placed).

My energy levels have improved a bit with the steroid replacement medication to treat my "adrenal insufficiency" and the medication that they started me on for the wacky potassium levels seems to be working well so far!

Things are looking up! I got to spend my first mothers day at home on Sunday (last year I was still in the hospital's isolation/BMT unit). It snowed about 6 inches, so we just stayed home and I enjoyed quality time with my boys, exactly the way I had hoped to spend Mother's Day this year!

That's about all I have for now...waiting to schedule my IVIG infusions, getting ready to taper down/off one of my meds, planning for my first round of immunizations, and hoping to be done with my daily IV infusions and my PICC line soon!
-Chellie 

Zits are the pits

Its been a while since I updated last and that is because I've been super busy. :-) Celebrated my 1 yr “re-birthday” on Saturday April 26th! We took family pictures with our favorite photographer and went out to dinner at my favorite Asian fusion restaurant to celebrate! I haven’t heard any official results from the molecular/genetic review of my bone marrow biopsy last month, but this is a good thing (no news after this amount of time is considered good news in the world of oncology…they would have called me immediately upon receiving the results if they were concerned). I have another appointment with Dr. Nash in 2 weeks so I can confirm everything then, but I am confident that things are the way they are supposed to be on this front.

These past few weeks have been very interesting medically. I had several medication changes (all from one appointment) and subsequently had a couple of pretty severe reactions to all the changes. My face broke out BIG TIME and I got acne for the first time in my life! I had always been very lucky to have clear skin (maybe it was all the chlorine & chemicals in the pool where I spent many hours each day as a teenager, that kept my skin so clear? :-) hahaha. Nonetheless, this recent breakout was terrible. I never realized how badly acne hurt! I saw a dermatologist and he prescribed me some topical antibiotic and recommended an over-the-counter medication as well which he described as a “corrosive agent”…(not something I wanted to hear about in reference to my skin)…but I was willing to try almost anything to get the acne under control.

In addition to the acne, I had to make an urgent appointment at the clinic last week due to painful swelling in my lymph nodes under my armpits. It was reassuring to hear from Dr. Nash’s partner, Dr. Brunvand, that he didn't think it was anything serious (ie: Lymphoma…which I was worried about) but rather it was likely a reaction of my immune system as I was fighting off a virus of some sort. The painful/swollen lymph nodes have since resolved and I am feeling fine on that front.

My immunosuppression levels have increased significantly over the past few weeks and my doctors aren't sure why (I had been on the same dose of medication for months and all of a sudden my levels shot up)…so we have been working on “tweaking” these medications. Each week it seems as though I am doing something different (cutting down on doses, taking meds every other day instead of every day, etc). I have more bloodwork scheduled for Monday next week to check these levels again and see where we are as far as these go. It’s a very delicate balance because if they are too high then I am very susceptible to infections & viruses and am likely to get sick…but if they levels are too low or drop too fast then I could very likely have the GVHD issues pop up again. I am a bit nervous about this and keep praying that the levels will even out and I will be back in my “target range” without dipping too low!

As with all things in our bodies, all of these other changes I've mentioned above were coupled with changes in my body’s ability to absorb & regulate electrolytes…so my potassium levels have been all over the place. Potassium is one of those things that we need for cardiac function and its extremely important that our potassium levels are regulated correctly. Unfortunately mine have been out of whack for about 2 weeks now. Its started with ‘hypokalemia’ which is not enough potassium and has all sorts of side effects. Then because I was so low, they increased my potassium intake (pills & IV fluids) and it swung me over the other side of the spectrum and as of Monday I was ‘hyperkalemic’ which is a bit more scary…so they stopped all of my potassium (oral & IV) and we are “regrouping” with a different medication (a potassium sparing diuretic) and increasing my potassium intake through my diet. We’ll recheck this level tomorrow and see where I stand on this, and go from there.

Lastly, I completed an “adrenal stimulation test” on Tuesday. It sort of reminded me of the gestational diabetes test that you take when they draw your blood, give you a medication/make you drink that nasty orange sugar water, and then draw your blood again. Instead of drinking a medication (like the diabetes test), they injected me with a hormone that is supposed to stimulate my adrenal glands to produce cortisol. My doc just called me a few minutes ago with the results and said that my adrenal glands aren't functioning as well as they should be (below normal) and that they are going to prescribe me some “replacement steroids” to help replace the cortisol that my body should be making but isn't. The doc explained that this is a common occurrence for patients who have been on long term steroid treatment (I had been on some sort of steroid for the past 9 months, and just got off of the last one about 2 weeks ago) and that our bodies get lazy when we are taking oral steroids and our adrenal glands often stop making their own natural steroids (cortisol). This is likely the explanation for why I've been so tired recently and the doc thought that once I started on the synthetic cortisol replacement that I would feel more energy. I am looking forward to this but I’m also a bit nervous about if it will affect my sleep like the previous steroids did. It’s a different type of steroid, so hopefully they will do their job and not have all the nasty side effects that I experience with the prednisone!

So, that’s everything that has been going on with me for the past few weeks. Everything is in flux and I’m just trying to be as flexible & fluid as possible to get through it. (just a speedbump in my trip). It reminds me how delicate our systems are within our body and how a couple little changes might not seem like a big deal on paper but when you experience all the effects of those changes in multiple systems, it adds up! Its been a bit of a roller coaster over the past few weeks but I am so thankful that everything has been managed on an outpatient basis and no hospitalization has been required during this transition! J I attended my first “cancer survivorship” group through Kaiser last week and was reminded of the importance of mindfulness so I have been practicing that as much as I can through prayer, medications, guided imagery, etc. Its funny how these are skills that we use with our mental health clients quite often but I had gotten “out of practice” with many of them and the topic came up a group and reminded me how much better I feel when I utilize these coping skills daily!

Thanks for all of your continued support and ongoing prayers! I appreciate them much more than you will ever know! I attribute a lot of my recovery to the amazing support system that I have and can’t thank you all enough! I am one lucky girl :-)
-Chellie

Feeling Blessed

Another test is in the books.  Completed my pulmonary function test yesterday at the Kaiser Office downtown.  Funny thing was that I had the exact same "tech" as I did 6 months ago and she remembered me, asked about my mom (who went with me last time) and she even asked about Scott!  I swear, I have met some of the most amazing, genuine and caring medical assistants, nurses, and doctors throughout this past year!

My "official results" for the pulmonary function test aren't back yet (we have to wait for the doctor to interpret them) but the tech who did my tests said that she didn't see any major difference from the test I did yesterday when she compared it to the test I did 6 months ago...so that is promising!  I am hoping for "same as last time" with all of my tests.  I saw Dr. Liel on Monday this week and she said that my DEXA (bone density) results looked good (aka: same as last time) and that there hasn't been any major progression in my osteopenia...so that makes me happy!

I have my bone marrow biopsy scheduled for Monday April 7th.  MIL (Judy) will be coming up from Pueblo to help care for Scotty on Monday & Tuesday since I'll be at the hospital with John all afternoon on Monday and then I'll be sore on Tuesday.  Thank goodness for family who live nearby and want to come watch the munchkin for us. :-) 

I am in "week 3" of my return to work and it is so nice to be back with my friends/coworkers!  It feels great to be working again, even if its only 15-20 hrs per week!  Honestly, that is about all I can handle right now because I have so many other doctors appointments during the week right now.  Hopefully, come May/June the amount of visits to the doctor each week will slow down and I'll be able to increase my hours at work at that time!  I think I could probably handle it energy-wise right now, but I am heeding Dr. Nash's advice and taking my return to work slowly.  Good ol' cautious/conservative Dr. Nash ;-)  lol

Not much else is going on in the Voss household recently.  We are simply adjusting to the "new normal" now that we have found another daycare provider for Scott.  Its so nice to feel like we are finally establishing our little family routines.  My "boys" (John, Scott & Jackpot) keep me constantly entertained and smiling.  I am such a lucky girl!!!

-Chellie

Back to Work

Exciting things are happening around here!  Last week when I saw Dr. Nash he said it was time to start scheduling my "1yr. Post transplant work up". HOLY COW, can it really have been nearly 1 year already?  Yesterday I did my DEXA (bone density) scan and had a ton of blood drawn for labs.  Today I am going to the dentist (haven't been allowed to go since before my transplant last year).  Next week I will have my pulmonary function test and then on April 7th I will be doing my bone marrow biopsy. Later on in April I will do my other annual appointments (OB/GYN, dermatologist, etc). My appointment to discuss all of the results and my overall health status at this point will be mid April with Dr. Nash and the "long term follow up nurse practitioner, Trudy).  Once we have discussed all the results then we will talk  about the possibility of decreasing my immunosuppressant medications and thus get me closer to being ready for my first round of immunizations.  Dr. Nash mentioned that the vaccines aren't as effective when someone is still on the level of immune suppression that I am on (thanks to my GVHD incident back in October) but he keeps telling me that I am doing well now, so we will see what his thoughts are about this later next month. :)

I am back at work part time and loving it.  I must admit that I am completely exhausted when I work a full day on Friday (working a couple hrs on Weds, a couple on Thurs, and a full day every Friday).  It's so nice to be back with my friends/coworkers.  They even brought in cupcakes to our team meeting on my first day back and the cupcakes said "welcome home Chellie"... I seriously have the sweetest and most caring coworkers ever!  I am so lucky to be back in the office working with them!  :)

Scotty started his new daycare last week and I couldn't be happier.  He seems to enjoy himself and Dottie ("the daycare lady") texted me pictures several times last week to let me know how he was doing.  I love technology! :) 

I am super excited to see my brother and his family next month when they come out to Colorado for a visit with my parents at the cabin.  Kyle and the gang will be stopping by our place not their way back from Pagosa and it will be really special for me to see him almost 1 year (nearly to the day) after he came out to Denver to donate those life saving stem cells to me last April!!!  My "rebirthday" is coming up next month and my "real birthday" is tomorrow... Had never really been super excited about birthdays in the past, but given the events of the past 14 months, I LOVE birthdays now!  Bring them on...they mean that I have made it another year and that is something to celebrate, for sure! :)

-Chellie

Rebirthday Celebration!

Just a quick update to let everyone know what is going on around here these days J

Yesterday was my first day back to work at my old job.  I am working part time (Wed-Friday) about 15-20 hrs a week as needed.  I won’t be able to go out to the emergency rooms like I was doing before, but I will be answering calls on the crisis line, helping callers get registered for intakes and/or referred to the correct agency for different types of services and helping find psychiatric placement for our clients who need inpatient psychiatric care.  I must say, it feels great to be back.  My coworkers are SO amazing and brought cupcakes to the office yesterday that said “welcome home Chellie” J

I saw the doctor yesterday and overall he is still pleased with my progress.  I have 2 massive bruises on my shins which I have NO CLUE where they came from and they look pretty knarly.  Dr. Nash is concerned about them and wants me to keep an eye on them for the next several days to make sure they don’t look worse (if they do, I will have to go back in to the clinic and have him re-evaluate and possibly do some bloodwork to test my clotting factors again (although my platelet count has been within the normal range for the past 3 weeks…so that is good). J

My liver function started correcting itself on its own but the docs (both my Kaiser doc, and transplant doc) agreed that they wanted me back on the liver protecting medication while I remain on the antiviral medication (which is the med that Dr. Nash believes caused my liver function tests to come back elevated).  So, I have restarted that medication and have also started taking the oral/pill form of the magnesium and potassium supplements that my body needs (and I have been getting via IV infusion nightly for the past 2 months since the Norovirus got the best of me in late Nov).  As soon as I can get up to 12-15 magnesium pills and 4-5 potassium pills per day (probably a month or two from now) we should be able to stop the IV infusions and just rely on the oral supplements to do the job.  I am looking forward to that and feel that I’ve done this “dance” with the starting and increasing the magnesium pills super slowly (they can easily upset the GI tract if you go to fast) many times before, so I am an “old pro” at this part now J lol

Next month will be my 1 year “re-birthday”!  I can’t believe its been this long already.  I will have to get a ton of extra bloodwork done, another bone marrow biopsy, as well as repeat pulmonary function and bone density tests to see where I stand now vs. pre-transplant.  Fingers crossed that it’s the same as before and that there hasn’t been any decrease in my lung function or my bone density!

That is all the latest medical news I have for you guys.  We have found a new daycare provider for Scotty and we are very excited for him to start with her mid-March.  I am sure Scotty will miss his time with Grandma Judy, as she has been helping us with him several days each week for the past 2 months, but I know he is a very adaptable kiddo and will also very much enjoy going back to the daycare setting where he gets to play with other kiddos! J

John and I had an absolutely amazing weekend at the Broadmoor Resort in Colorado Springs a few weekends ago to celebrate “making it through the past year” and the fact that I have been in remission for about a year now.  We were treated to amazing accommodations in one of the resorts “Brownstone” properties and also got to enjoy a morning at the Broadmoor Spa and we took advantage of their new bowling alley on one of the evenings.  Thanks again for the gift certificate, Jim & Maren…you guys are amazingly generous and we felt so special!  It was an awesome way to relax, celebrate and energize ourselves after such a challenging year!

-Chellie

A new PICC

Another quick update...  Things continue to roll right along :). I am sleeping MUCH better (yay for 6 hrs of sleep again without having to take any sleep meds!). I am also able to walk up the stairs in our house without having to pull myself up with the handrail (I still have to hold on to the railing for support, but I am definitely making serious progress as far as my muscle tone goes!) :)

On Monday this week I had to go into Kaiser and get my PICC line replaced because the one that was in my arm was coming out!  Apparently a PICC line should end in your heart (where it dumps the meds you infuse) and mine had pulled out of my arm slowly over time (the past month or so) to the point that 7cm of the line was sticking out of my arm (instead of the 2-3cm that is standard)...so my previous PICC line wasn't dumping into my heart anymore and instead it was dumping into the vein just outside the heart.  This isn't a huge deal for my IV electrolyte hydration infusions everyday, however, my treatment team said that they couldn't use my PICC the way it was to infuse anything else (meds, chemo, etc) and that heaven forbid, I land back in the hospital for anything they would need access to a fully functioning PICC line, so they wanted me to get it replaced/fixed.

The procedure on Monday went very smoothly.  They confirmed with a chest x-Ray that this latest PICC (3rd time's a charm, right?!?) is properly placed and I am pleased that it went so smoothly (to be honest I was really worried about it giving me another blood clot).  I am going to have to be very diligent about remembering to pick Scotty up with my left arm (non-PICC arm) because I am not supposed to do any heavy lifting with that arm and they think that *might* be one of the possible reasons that the previous PICC line started to come out...one of the hazards of being a mommy, I guess :) lol 

Other than getting my PICC line replaced earlier this week, no major updates on me.  Biggest news  around here at Casa de Voss is that we officially have a "toddler" and Scotty is walking up a storm these days!  He started earlier this week and I was able to capture some video while I was home with him during the afternoon on Tues and Wednesday!  :). It is so awesome to watch him navigate his way as he practices this new skill!  He is going to keep us on our toes, for sure!  :). That's good though, I could use the exercise of chasing after him!!! :).

-Chellie 

Scotty Time!

So this is going to be a quick update but I wanted to share some good news!   Saw Dr. Nash on Thursday last week and he said "I am very pleased with your recent progress" :). My GI symptoms have lessened which is a relief and as a result Dr. Nash said we could decrease one of my steroid medication dosages...so I only have to take it once a day instead of twice a day.  He also said that since I am off 2 of the 3 steroids and could possibly be off this last one in the next few weeks, we are able to discontinue one of the prophylactic antibiotics that I was taking (they added this antibiotic when I was in the hospital in October and was on all the massive doses of steroids which put me at a much higher risk for infection).  So I got rid of 2 pills a day at my last appointment!

I am also starting to feel a difference in my muscle strength.  I have been able to stand up from the couch without pushing myself up with my arms several times this week (mostly in the AM when I am not as tired from the day).  Getting up the stairs at home is getting a little bit easier each week as well!  I am feeling well enough that I was able to shovel our sidewalks during the last storm we had (light powdery snow helped). :)

My hair is growing out a bit...to the point that I need a trim (it's starting to touch my ears)...so I will get to go see my amazing cousin next week and have her trim me up.  It is still so short that there is no way to style it and I am still rocking wigs and scarves, but I am thinking by the beginning of summer (or late spring) it might be grown out enough to style it (like Ginnifer Goodwin or Michelle Williams short styles.  We'll see.  It would be great timing to have short hair since summers in Denver recently have been rather warm! 

As much as we have hated losing out daycare provider (hoping it's temporary), I have really been enjoying my time home with Scotty.  It is exhausting, but so special.  Yesterday he took his nap with me in the recliner I his room (I can't lift myself and Scotty when he is asleep, from a chair yet, but I will get there)...having him sleep so peacefully on me while I just watched him was perfect.  I am so thankful that this little guy is part of our family and arrived safe and sound before all the craziness of the past year.  We are coming up on the anniversary of my initial diagnosis (February 15) and it is so crazy to look back at the past 300+ days and think about everything our family has been through! 

-Chellie