Fighting the system

Been a while since I was able to sit down and blog an update again. Been extremely busy with clinic appointments and “fighting” with my insurance company regarding some ridiculous rules that they are trying to impose which I am fighting back on (patient rights and safety issues). Thankfully, my primary transplant oncologist (Dr. Nash & his team at CBCI) have been AMAZING, as has my primary oncologist over at Kaiser (Dr. Liel) and they have been advocating for me…its just the “bean counters and administrators and “higher up medical officers” at Kaiser who have no patient contact & basically are just the fiscal/bean counter people who are making my life incredibly difficult at this time. However, I advocate for my clients/patients for a living when I am working in emergency psych/mental health and I know all about the insurance/authorization side of things as well from my experience working as an “authorizing agent” for insurance companies as well as a patient advocate…so I understand how things work “behind the scenes” and I am NOT giving up my fight to make sure that I am heard. Tomorrow I am supposed to hear from a patient advocate at Kaiser (we’ll see if that actually happens since I have told them that I will be filing a formal complaint). If it doesn't happen I’ll be calling in some favors with some family members and resources I know locally to “take it up the chain” once again :-) Gotta love when you know the right people, understand the behind the scenes, and can keep advocating for yourself. I feel terrible for patients who might not have this knowledge/resource and either give up/give in…I know it happens WAY TOO OFTEN and it makes me SO angry. Which is why I am not going to give up/give in and I am going to keep on it for both myself (as I am BEYOND PISSED…) and those of you who know me well, know that it takes quite a bit for me to “lose it” and express that I am angry.

Physically I am still struggling (which I acknowledge makes me more irritiable and definitely fuels the fire when it comes to my anger/frustration with Kaiser!). I am still not sleeping well (only about 3-4 hrs per night, with sleep meds) due to the steroids...but the good news is that Dr. Nash has agreed to quicken my taper down on the steroids for many different reasons (continued issues with muscle weakness which is still pretty bad and he wants to get reversed ASAP) as well as the steroid induced diabetes (such a hassle to have to take my blood glucose 4 times per day, administer insulin, etc). He said that as I taper down on the steroids, the muscles should recover, my blood glucose should come back down and I should be able to stop having to administer insulin injections, and the sleep issues and irritability that results should also start resolving. I CAN’T WAIT to feel somewhat “normal” again and to be able to regain the muscle strength again…I’m telling ya...for someone who was pretty freakin’ independent before all of this, it is SO frustrating to not be able to easily stand up from a sitting position, to have to pull/support myself up the stairs in our house and to not be able to just lift my legs into and out of the car without supporting them with my hands. As I mentioned in my last blog…it gives me a whole new appreciation for individuals with muscle coordination and mobility issues!

I am trying desperately to increase the amount of oral magnesium pills that I can take (have to taper up slowly) because Dr. Nash said that as soon as I can get my magnesium levels within range on oral pills we can probably stop the IV fluids and just supplement my electrolytes with oral magnesium and potassium pills. This would mean that I could get my PICC line pulled (which has been SUPER cumbersome) and then we can also start weaning me off of the Coumadin (blood thinner that they put me on as a result of the blood clot I got as a side effect from placing the PICC line).

So…long story short…these have been a very challenging last 2 weeks and I am both emotionally and physically weakened but I am EXTREMELY hopeful that in the next 2-3 weeks that things will start to turn around rather quickly as I taper down on the steroids and can get rid of some of the nastiest side effects and I also hope to be able to get rid of my PICC line and taper down on the blood thinner which would make me feel much more reassured that things are once again “moving towards normal”. I am also looking forward to being able to enjoy the holiday season with the hopes that this stress of the past 2 weeks will be behind me and that things will only get better/easier and “closer to the new normal” from here. :-)

For those who would like to send prayers/thoughts/juju…would love and appreciate them regarding my ability to tolerate the taper down on the steroids without any “GVHD flare ups” so that we can continue with the taper off steroids as planned. Dr. Nash indicated that if I have any “flare ups” we’ll have to slow down the taper and it will take longer. Praying that this will simply go as planned and we can get it under control and behind us ASAP! Would also love prayers/positive thoughts that my body can tolerate the oral magnesium and potassium supplements so I can get rid of this PICC line that dangles from my arm and simply feel “normal” again without having to wrap it before showering, figuring out how to contain it under my clothes, etc.

I go in to the clinic again tomorrow morning for my weekly labs and we are hoping that my platelets are holding steady and that I won’t need a platelet transfusion (my platelets are really low right now because the new immunosuppressant medication “chews up” my blood cells and my platelets are trending downward as a result. Platelets are important because they help your blood “clot” and since I am already on the blood thinner due to the blood clot from the PICC line, its even more concerning that my platelets remain steady (even if they are low) so I can avoid a transfusion. (I had to have several platelet transfusions earlier this year during chemo and my transplant because my body apparently just has a hard time keeping up with the “normal threshold”. Here’s hoping that Kyle’s bone marrow continues to churn out strong healthy “GO NAVY BEAT ARMY” style platelets and that I’m “good to go” in this area for the time being until we can get the PICC line pulled and get me off the additional blood thinning medication…then I should be fine according to Dr. Nash :-)

In more fun news…I have been really enjoying the AMAZING fall weather we’ve had here in Denver this past week! I made cookies for John (white chocolate chip macadamia nut) earlier this afternoon and I am looking forward to baking Snickerdoodles for all of the nurses and staff at CBCI later this week for all of their help with my dealing with Kaiser these past 2 weeks. ALL OF THE CBCI staff have been absolutely amazing and they deserve more than big bags of fresh warm Snickerdoodles…but I have a feeling that some cinnamon/sugary goodness will bring smiles to their mouths and I love to bake…so it should be a win/win situation :-) I sure enjoy fall/holiday baking and being able to share it with them will make me even happier because I know that they enjoy getting homemade baked goods from the patients and their families even if its just a small token of our appreciation for the jobs they do!

Love, Chellie

Rogue cells don't stand a chance

At my clinic appt on Wed afternoon I got the "molecular/genetic results" of the BMBX from 2 weeks ago while I was inpatient.  Still "free and clear" with 99.6% Kyle's marrow/cells.  Dr. Nash used the term "fully engrained" and explained that even in the 0.4% of marrow cells that they pulled that are still "me" genetically, none of them show any sign of leukemia or the nasty MLL gene that was our biggest concern (reason I went through the transplant process to begin with).  The other good thing is that since I am fully engrafted and having GVHD issues, it's very unlikely that the MLL gene should show up again because I have what is also known as "graft vs. leukemia affect" now...which means that Kyle's cells would identify a "rogue cell that might be MLL affected" and his cells would seek and destroy it (military training aside :) lol since his cells  are already doing that to some of my healthy cells.  Lol

I had a Physical Therapist come out to the house yesterday to evaluate my leg strength and "proximal muscle weakness".  She confirmed what we already suspected and gave me PT exercises to help strengthen those muscles.  I have to do 1 set of 10 on each leg 3 times per day.  (Just another thing to add to my schedule of hourly meds, etc...but this is super important., so I will make it happen.  The sooner I feel stronger and can move around better, the easier things will get in so many other aspects!!  :)

I have another clinic appt this morning (bright and early @ 7:15am downtown)... So I had to bring 3 bags with me (my purse, my "clinic bag" and the food, insulin, my IV pump  and fluids, etc.  I am gonna look like a little Sherpa walking around since I have my clinic appt, then need to go to the kaiser pharmacy across the street to pick up a bunch of scripts, and then run a few errands on the way home from downtown (to maximize my time).  :)

I am looking forward to a weekend at home with my boys, just relaxing and hopefully getting some organization done in the whole wardrobe ordeal (at least getting stuff that is way too big out of my closet and into Rubbermaid bins for later sorting, so I have room in my closet to start putting the few articles of clothing I do have that fit...and they are easier to find!  :). Lol

I can't believe it's already Nov.1st.  Scotty and John had a great time at a Halloween party at Gus & Erin's house (they are good family friends and Gus was John's best man in our wedding).  I stayed home with Jackpot and handed out candy to our neighborhood kiddos last night..was fun to see so many little ones....lots of super cute costumes and smiles...favorite of the night was a little boy (probably 18-24 months who was dressed  as a little turtle and he was ADORABLE!!!

Super excited for the holidays that are quickly approaching and spending time with family...visiting and making memories!

-Chellie  

Rock'in 90's Style this Fall

So good to be home... So good in fact that updating the blog has been on my to-do list for several days now... But I just found myself busy doing so many other things that I have wanted or needed to do that this kept slipping further and further down the list.  Lol.  But right now I can't sleep (stupid steroids) so while my boys are in bed I will give ya a quick update :)

Here is a quick run down of what I/we have been up to for the past few days: 

Finally got home from the hospital  and the pharmacy around 745pm on Friday night.  Just in time to catch Scotty before his bedtime!!! :). Best goodnight kiss EVER!!!

Saturday morning my MIL watched Scotty while John drove me on a bunch of errands that had to be done immediately (bank to deposit multiple checks that had come in for me over the past 3 weeks), the grocery store and Costco so I could shop for my GVHD2 diet (very restrictive and needed options since I am only allowed to eat about 1/8 of the things that would normally be dinners or in out pantry/fridge on a regular basis.  We got me well stocked and I feel like I have good options (even if they are SUPER boring).  I have been trying to get creative and try things that I might not have otherwise eaten...but it's really challenging without being able to use any good spices! :( lol.

We quickly ran to Target and Kohls as well on Sat AM so that I could get some Rubbermaid storage containers (more on this below) and a George Formman grill with removable plates (since I am eating a TON of grilled chicken, turkey, and lean pork chops.  The Foreman grill has been awesome!  :)

On Sunday our family photographer came over and did some family photos for is (yay) and also got some pictures of Scotty for his "1 yr. pics". It made me SO happy to know that despite all the craziness in the past month, we were able to keep this appt and get some family photos since it had been a while and nowadays I just simply want to make memories with my boys and the photos help me realize that even though we were physically separated for 17 days, they are where I am "home" in this crazy little world! :)

We watched the Broncos game on Sunday and then Sunday night I got to get my boys ready for their Mondays (felt so grounding and centering to get back to my routine). 

Monday and Tuesday were BUSY with appts all over town which I drove myself to (downtown to the clinic twice, social security office, DMV, 3 trips to different pharmacies, more little errands that I had needed to do all month and trying to get more info on my clinic/doc appt schedule for later in the week so I can make other appts and get my calendar ready for everything.  This has been the most challenging things for me because I have to take meds or check my glucose/administer insulin, plan very specific meals, and I am LITERALLY taking a med or checking my glucose EVERY HR from 6am-2pm and then doing my home IV from 3-5, more meds at 6, dinner and more meds at 7 and then a 2 hr break before my 9pm meds and then nighttime/sleeping meds.  This makes it a HUGE challenge to run any sort of errand or attend an appt because I have to plan even further ahead so I can bring my meds, glucometer, insulin/syringes/etc, pre--cooked & planned meals, and  all my other stuff with me if I leave the house for more than about 45 mins.  It's NUTS!  I am a dang good organizer and this has been a massive challenge/undertaking even with my "mad organizational skills"! :). Lol

Another challenge I am having is that the steroids have all but destroyed my "proximal muscles" which makes me SO weak.  I can't get up off a chair or the couch by myself without bracing on something.  It takes me 5 times as long to go up and down stairs because I have to put so much effort into lifting my legs and I can't carry anything up and down the stairs because I have to use both hands on the railing to balance and help pull myself up!  It is SO incredible frustrating not to be able to run upstairs and grab something, put something away, or simply move around and get stuff done the way I used to.  Doc promised me it will get better as I continue to taper down on my steroid, but it is beyond annoying/frustrating to have to put that much effort into something that I took for granted.  If I need to go upstairs for any reason, I usually have to put on a backpack so I can carry up my phone, iPad, and what ever I need to take up there with me if I am gonna be up there for more than 5 mins since it takes me that long just to get there.  I am like a little turtle with my backpack moving slowly and steadily up and down the stairs in my own house... It cracks me up thinking about it but is also such a pain in the rear!  Lol. I now have a whole new appreciation for other patients/people who struggle with mobility and strength/coordination issues!!!!!!

So, the Rubbermaid tubs that mentioned above are literally about to take over an entire room of our house as I go through my wardrobe from the past 10 years and get ready to consign stuff.  1 yr ago I had just had Scotty and weighed 115 lbs more than I do today... And for the past 8 years before that, I had been wearing sizes that I would rather not mention here. I literally don't have ANY fall/winter clothes that fit me.  I need an entire new wardrobe in a size that fits (and I mean, doesn't FALL off of me or make me look like I am back in the late 1990s/very early 2000s.. the last time I weighed what I do now).  I didn't realize how much stuff I had accumulated in the past 10 yrs and I need to get rid if it so I can but clothes that fit (so I don't look like a hot mess or a kid dressing up in their olders siblings/parents clothes!  Lol. I even need new undies, PJs, fall winter jacket, jeans, shirts, sweaters, etc.  It's kind of a massive undertaking but I want to do it in an organized way so that hopefully I can consign and give away the pieces of my old wardrobe that are still good (just simply don't fit me)... And then shop smartly (sales, basic separates, etc for my new wardrobe).  This is hard for me since everyone who knows me well is aware that I am the absolute furthest thing from being "fashionable" or having any sense of style, really!  If there is anyone out there who has suggestions and or wants to help me out, I would greatly appreciate any/all advice in how I should be finding/building this new wardrobe of mine so that I am wearing clothes that for correctly (esp since my body/shape has changed so drastically in the past 2 years...I don't even know how things are supposed to fit properly).  I feel like I need to be on an episode of "what not to wear" with Clinton and Stacy.  (But I don't have time to shop when I am taking meds and going to appts ever freaking hr of the day!  LOL.  So in the meantime, if ya see me in ill-fitting clothes, walking super slow and I look like I love the 90's fashion trends still...please be kind, I am working on it (as fast as I can with how slow I move these days! ;). lol

Just another fun thing to mention is that I feeling so blessed that I am able to enjoy these last beautiful fall days outside the hospital.  Fall is my absolute favorite season of the year and just being able to see the leaves changing/falling and hearing/smelling the leaves crunch underfoot when I walk anywhere makes my heart SING with gratitude that I get to experience this at home this year and not be in a tiny little hospital room for weeks as my favorite few weeks of the fall season swing right past us!  I am also SUPER excited about the holidays coming up and spending time with family/friends... Making purposeful memories and just savoring those moments that we all take for granted so often when life gets busy and we get caught up in the "hustle and bustle".  This past year has really taught me a lot about perspective, slowing down, and just being grateful for what I do have which is an AMAZING support system, a team of medical providers who have saved my life 3 times now in the past 8 months, and the most beautiful and amazing family/marriage I could EVER ask for!!!!

Love, Chellie

Ready for discharge!

I am writing this Thursday night...anticipating one more night here in the hospital.  I am scheduled to discharge Friday late afternoon!!!  Woo hoo :). Tomorrow night I will be home with my boys and get to put my son to sleep in his crib in the nursery for the first time in 17 days!  I am beyond excited to cut off this hospital wristband, put my wedding rings back on the moment I walk back in the door at home, sleep in my own bed, next to John and know that my son is just steps down the hall...(Simple pleasures!)

Today has been busy with lots of "education" from the nurses on how to flush and care for my PICC line, nutrition/dietician team giving me info about this majorly restrictive diet that I will be going home on for the next few months, the diabetes educator who has become involved because the high dose steroids have made me diabetic (temporarily, hopefully) and coordinating the logistics of making sure I have all the prescriptions I need (11 new meds) and that John can pick them up at the Kaiser pharmacy before he heads to the hospital tomorrow to pick me up.  I feel like an air traffic controller trying to make sure that everyone knows what I need and then delegating it and following up to make sure it happens.  My background with case management services (work) and knowing how to advocate are coming in VERY handy!  :).  I am sure some people might see me as neurotic/bossy...but hey, it works for me and I am ALL about getting the heck out of here and making sure I have all the info/supplies/follow up appts/etc that I need so that I can stay home  and NOT land back in the joint due to an "oversight" or mistake because someone dropped the ball on something.  Discharges and follow up care are COMPLICATED!  :)

I have a few more things to do on my "get accomplished before discharge list" and it's one of my favorite things to do.   As soon as I am done with this blog post it will be time for me to sit down and write thank you notes to all of the special nurses who I have connected with here on the unit over the past 17 days.   I am also going to write up some recognition cards so that their boss (the unit RN supervisor) knows what a good job they did.  I have had regular interactions with 50+ staff over the past 2+ weeks and there are at least 10 that deserve formal recognition from the hospital for how absolutely AMAZING they are!   So excited to share that and then write them personal notes just to let them know how much I connected with them and appreciated them. 

Thanks again for all of the ongoing prayers, thoughts, and positive energy that is being sent my way and to John and Scotty.  We feel surrounded in love and support and can't thank everyone enough!  We are so blessed!

-Chellie

Life in the joint - my awesome weekend!

Still in the "joint" (hospital). Turns out this hospitalization for GVHD of the "gut" is no joke (despite my best efforts to keep things light hearted and make the best use of my time here at my "medical day spa" :).

Had an amazing weekend. First off, I was able to get my 6-month bone marrow biopsy with aspiration done with conscious sedation right here in my hospital room on Friday afternoon. They did everything here at my bedside! The NP who preformed the procedure was AMAZING (she apparently does most of the BMBXs for anyone who is inpt, which is why I had never had her do one for me before. I asked if she ever did them for outpatient patients (cuz I wanted to request her specifically again in the future and she said "not usually, but you can always ask and see what they can schedule). Lol. I will CERTAINLY do so when it comes time for my next one in January! While I will always "feel" it when they actually drill in and suck out the marrow and then take a chunk of bone for the biopsy, she was SUPER fast and got a good sample the very first attempt, so she is by far the "winner" in my book!!! She also kept me very calm and reassured the entire procedure which was a full time job in and of itself since I am so traumatized from my BMBXs at Kaiser earlier this yr! It was crazy at one point when everyone in the room realized we had lived in good oil' Ventura, CA at one point during HS/college. Both the NP and my nurse that day who did my IV drugs had gone to school @ UCSB and had been "lady gaucho" swimmers. We talked about all the swim meets I had attended as a club swimmer and HS/district meets that were held up at UCSB. Such a small world and worked wonders to keep me calm. As a result, I was SO much less sore/achy from the biopsy (probably because I was relaxed and didn't tense up). The results aren't back yet, but we are hoping for at least some preliminary results by the middle or end of next week. I am optimistic that everything is going to show that I am still cancer free and that Kyle's cells are doing their "thang" in there just as we have asked them too! :)

My team that did my BMBX sedation commented (just as they did with my endoscopy/colonoscopy the week before) that they were amazed that I took 3 times the amount of medication and that I was still "yapping away" and having a full remember able conversation with them throughout the procedure, and then came right back so quickly without showing any drowsiness or anything. She had never heard the "legend of red heads and anesthesia" but said she wanted to read about it more now because it seemed so strange to her. Shortly after my BMBX on Friday afternoon, I got a pleasant surprise visit from a good friend and her husband. This good friend of mine has undergone a BMT as well and has been such an amazing support and inspiration to me. It was great to see them and get her reassurance that this is just a little "speeding ticket" and that while I may be " sitting at the station, "processing" for a while longer than I want, at least they aren't arresting me and throwing me in "jail" ( the HEPA filtered ICU level BMT unit that is downstairs where only the sickest patients go and the length of stay is usually measured in MONTHS. So, I have that going for me! ;). Lol

On Saturday my doctor broke all the rules for me and granted me a 1-hr "off the oncology unit" pass so that I could go downstairs to a different floor and visit with Scotty!

John brought him to the hospital and we hung out in the totally empty Radiology Dept waiting room (they are closed on the weekends, so it was a perfect non-crowded place for us to be able to visit, play and spend an hr of quality family time! Scotty seems overwhelmed at first (hospitals can be overwhelming to adults, so I am sure he was just trying to take it all in, and he was a little timid when he saw that I was hooked up to the big IV pole...but he warmed up pretty quickly and I LOVED seeing him. We had a "floor picnic" right there in the Radiology Dept waiting room on a big blanket that John brought in with them. I got to see Scotty feed himself Cherrios (this was new for me because he wasn't even close to feeding himself anything when I admitted to the hospital 11 days ago! Now he shoved Cherrios I his mouth like he is a little squirrel gathering nuts for the winter! It is the cutest thing ever :).

I also got to help him practice walking, read his favorite book and then just chase after him and let him chase me as I wheeled my IV pole around with me. It was the best medicine that I could have received on Saturday and exactly what I needed to fill my heart/spirit and refocus my efforts on my physical recovery so that I can get back home ASAP. To top an already amazing Saturday morning visit with John and Scotty, I had another very good friend come visit me that afternoon. My heart is full of love and support and I can't thank everyone enough for their visits, emails, phone calls, texts, FB messages, etc! You guys are amazing and I can feel the love/support and continued prayers!

Here is the latest update medically:

My doc is making all sorts of positive changes effective Monday. I will switch over from IV form of steroids and immunosuppressant medications to pill form! This means that my levels are therapeutic now and he wants to see how I do once everything has to be absorbed and processed pill form through my intestines. He said with GVHD of the "gut" like I have, it's really important that we try this and then check levels again in a few days (probably Wed/Thursday) to make sure that my system can effectively absorb all the medications that I am taking. He also switched my blood thinning medication over from injection to pill form, so I won't have to do injectable blood thinners at home. The oral pills (Coumadin) require a LOT of monitoring on an outpatient basis but he is hopeful that it will be "short term" (4-6 months) which I can totally deal with even if it's a hassle in the meantime.

Even with the switching over to all oral medications, I am going to have to learn a TON about monitoring my blood glucose because the steroids have officially made me (temporarily) diabetic. Without insulin, they raise and keep my blood sugars in the high 170-220 range which is dangerous and needs to be corrected with sliding scale insulin to protect my body. So, I will be learning how to monitor that, figure out my "carbs" which will be super challenging since my GVHD diet is mostly white/refined carbs since they are they easiest thing for my "baby gut" to relearn how to absorb. Should be quite the adventure/education and gives me a whole new respect and level of understanding for people who struggle with diabetes all.the.time. Thankfully, my doc believes that this is likely just a temporary side effect from the mega dose of steroids, and like the blood thinning medication, I will have to monitor it super closely and learn how to manage it with sliding scale insulin injections and carb counting for the next several months but that it should resolve as we taper further down on the steroid dose in a few months. There is always the chance that this could be an uninvited long term side effect, but I am just taking it one step at a time and going from there. I have fain that it's just temporary and that by the time my BMT "re-birthday" comes around again in April next year, all of this will be a bad memory :)

If everything continues to go according to plan (and the continuously warn me that GVHD of the gut is so unpredictable) they still think that a discharge home at the end of this week is a possibility. Keep your fingers, toes, eyes, etc crossed for me that I continue to "sail" right through and I can hold them to it! :).

With the switch over to all oral medications, I am no longer hooked up to my IV pole for constant fluids and meds 24/7... I am "unplugged" for the first time in 12 days this morning and it feels SO good! :). I can actually get up and move around my hospital room without having to worry about yanking my IV or dragging the pole everywhere I want/need to go. I will get to do my walking and PT/OT exercises today without having to take my IV around with me which is super exciting (small victories, man!). LOL

That's it for now. Lots of good news and visits over the weekend. Please send up prayer and/or positive thoughts that my body continues to heal and show progress so the doctors are reassured that we are on track and feel comfortable with an end of the week discharge! I will have a Full-time/over-time job just keeping track of the 6 new meds they have added to my daily requirements, the 4-5x/day glucose monitoring and insulin injections, the intensive blood thinning medication monitoring (several times per week), as well as keeping all of my appointments at the clinic (probably 3x/week for the first month or so), and doing my daily home IV fluids and line care on my new PICC line. I am up for the challenge though and can't wait to get home (hopefully Friday) if nothing scary pops up and I can prove to my docs that I am steady and reliable and can manage this at home now :). Time to make lots of "checklists" ( and I am the queen of those as many of you know...LOL) so I can show them I am capable of monitoring everything! :)

TMI & Apple Juice Chasers

Sorry this is a bit delayed. Lots to catch up on. First is that I am still in the hospital. Unfortunately the timeline that I understood was wishful thinking on my part :-) (Can’t blame me for being optimistic/naïve, right? Lol

Upon admission last week I was thinking this was going to be a few day hospitalization and a quick discharge back home. Unfortunately I’ve had some complications that have meant that they need to monitor me more closely and this means a longer stay…so anticipated discharge in early-mid next week now. So, all in all, probably going to end up being a full 2 weeks in the hospital…quite a blow to our little family life since it was sort of unexpected and definitely taking longer than I had initially thought/hoped. Oh well. I am treating this hospitalization as a “medical spa” and really focusing on reconnecting body/mind as well as getting projects done on the computer :) Today I started the project of organizing all of the pictures that we have taken in the past year (4 different phones, 2 ipads, the digital camera, etc) and got them all downloaded, edited and uploaded into Costco so I can start getting prints made and finally begin Scotty’s baby scrapbook. It was SO much fun to walk down memory lane today as I went through labor & deliver pictures, his first trip home, first bath at home, first Halloween/costume, Christmas pictures, pictures from earlier this year when I was first diagnosed and went through chemo, the transplant, and the summer with my mom visiting. Scotty is such a blessing and it was very sentimental and surprising cathartic to look through the past year and give myself credit for everything that I’ve been through (and come out even stronger). I am one lucky girl to be married to such an amazing man, have such a beautiful son, and a family/friend support network that is beyond caring/supportive! Thank you from the bottom of my heart! :-)

Here is the latest update as far as my physical health. They had to place a PICC line (a catheter in my arm) to deliver the IV medications. Unfortunately, one of the risks with the PICC line is that you can get a blood clot. Well, sure enough, on Friday evening I noticed that my armpit area was feeling sore. I almost didn’t mention it to my nurse because I just thought it was sore from them jamming a catheter into my vein that runs into my heart. I am so glad I mentioned it though (they make ya a little hypervigilant around here and report every minor symptom, even if you think its nothing). The doc ordered an ultrasound ASAP and within 2 hrs they confirmed that I indeed had a clot. So…I am now on blood thinning injections 2x per day to help mitigate the risk. They are hoping that this treatment will be enough to allow my body create its own “work around” and eventually (over the course of the next 4-6 months) they hope that my body will just kind of reabsorb the clot. They are also monitoring me extremely closely to make sure that the clot doesn’t break loose and cause a pulmonary embolism (VERY slight chance, but they are on top of it by monitoring my oxygen saturation, listening to my lungs and taking all my vitals every 4 hrs.

My doc has me on the “mega dose” of systemic steroid and has added 2 additional steroids that specificially target the lower intestine (which is where the active GVHD is occurring). One of the new steroids is a pill and the other one is an oil form that “slips” through the stomach & small intestine and then kind of “coats” the inside of your large intestine and helps it heal that way. Totally fascinating, but SO gross to shoot a mg of what is essentially castor oil into your mouth and swallow it. Luckily, through trial and error, I have come up with a system that works (swig of apple juice, shoot the medicine and chase with more apple juice.). :-)

I have responded well to the steroids so far (GI bleeding is resolved, I haven’t had any pain/cramping for 4 days, and my stool volume is coming down.) That last part is probably TMI…but the docs keep stressing how important it is for this to happen, so I am choosing to share my “progress” in that area since its “kind of a big deal” J lol Sorry. John and I were joking that after having a baby last year and then with this recent GVHD stuff, poop has become a regular topic in our conversations…sad but true. NOT ever something that I EVER IN MY WILDEST dreams thought would be a major topic of conversation in my daily life, marriage, etc. Funny how “real” life gets sometimes. Really helping me learn to just be authentic and accept that his is the “new normal”…it is what it is. :-)

Side effects from all the steroids are that I am feeling hypomanic (not sleeping well) but they are giving me meds to help with that too. The steroids also affect my blood glucose, so I have had to start monitoring my blood glucose before each meal, and they have to do sliding scale insulin injections to keep that under control. The steroids at this high of a dose also suck all the calcium out of your bones, so they had an endocrinologist come in and consult on my bone health. She is recommending a medication (1 time infusion) to protect my bones from any further damage…so that will be good. Additionally, the steroids cause muscle deterioration, so I am being very vigilant about doing my PT and making sure I walk 2 miles worth of laps around the unit each day. It’s a full time job to take my meds, do my PT & exercise, keep track of my diet, and monitor all of my symptoms! I am documenting everything for my own records just so I can keep it all straight and advocate for myself. :-) Gotta keep this brain engaged somehow! Lol

Good news is that since I am already here in the hospital, Dr. Nash was able to get Kaiser to approve my bone marrow biopsy with sedation with less hassle. I am scheduled from my 6 month BMBX and aspiration on Friday @ 2pm right here in my room. Pretty sweet set up that they are coming “bedside” to my room, and it will save us $150 outpatient procedure copay, as well as the fact that John won’t have to take a day off and drive me downtown for an outpatient procedure.

The last health update is that Dr. Nash has been increasing my immunosuppressant medication (Tacrolimus) and he added an additional immunosuppressant that should help. Side effect to this is that I will be even further immunosuppressed and essentially I am back to square one (almost like when I was just first out of transplant). I have to go back to “super secret code Clorox” at the house and I will need to be extremely careful about being in public again (wearing a mask, no public places during busy times, etc). Kind of a bummer since I had just started the process of volunteering and feeling connected professionally again. Just gotta stay on top of things and set my clock back again…and really take care of myself again. Definitely a reality check that this is a “marathon” and not the 5k that I had kinda of started treating it like recently.

One of the sort of interesting things that the doc explained to me today is that I essentially have a “baby/virgin” gut right now as my intestines heal. This means that I am on a SUPER DUPER restrictive diet because they need to see how/if I am absorbing nutrients and allow the cells to regenerate and start functioning. Essentially I am allowed to have grilled chicken breast, hard boiled eggs, applesauce, bananas, pretzels, white rice, green beans and lactaid milk. No dairy, whole grains or anything that they usually say is healthy & what you SHOULD actually eat! Lol Its been kind of a mind warp to switch my thinking around since I had been working so diligently on eating healthy & trying to lose weight. I will stay on this diet for the forseeable future and just like you do with an infant, we will introduce foods one by one, very slowly as we monitor my reactions. It’s a trip to eat the same thing everyday, very “Groundhog Day”ish. I find myself getting ready to order my meals and thinking that I need to look at the menu, but really I already know and should just be able to tell them “send me my usual” :-) lol We will definitely be buying chicken and rice in bulk from Costco for the next few months. Hahaha.

Okay, this is getting really long. Just wanted to get all the info out there for everyone. I am in very good spirits and the team of docs/nurses/chaplain/case managers are taking EXCELLENT care of me. I am extremely hopeful framing the experience in a way that this is just like a “speeding ticket” and I have to slow down and be cautious again.

Thanks for all of the continued support/love and prayers. I feel them and appreciate them more than you will ever know! :-)

Love, Chellie

Two steps forward, one step back...

Blog update 10/11/13

So... I have had a mild/moderate set back in my recovery unfortunately. On Wednesday afternoon I was admitted to the hospital (sort of unexpectedly) after an urgent clinic appointment that I had made due to concerns about worsening GI symptoms. The doc at the clinic felt it was best to admit me to the hospital for observation and lots of testing so we can really figure out what is going on. I had been feeling "off" and for the past week or so had been experiencing very painful abdominal cramping, bloating, diarrhea, etc. When it got to the point that it was so painful that I couldn't sleep, I called the clinic and they told me to come in and see my doc for an urgent appt.

Well, that urgent appt quickly turned into a full inpatient hospital admission (Presbyterian/St.Lukes - downtown). Same hospital where I had my transplant but a different unit. I am on the general oncology/BMT overflow unit this time). Luckily John had driven me to the clinic for the appt so he was here with me to get me admitted to the unit and then went home to pack a bag and bring it back to the hospital for me. (If anyone deserves "husband of the year" award it's my man! Hands down!!!

The doctors wrote orders for me to have a PICC line placed (since I had just had my central trifusion line pulled a few weeks ago). So I now have a semi-permanent IV access with 2 lines on the inside of my upper left arm. Gonna have to start researching "cute/fashionable PICC line covers" so that I can keep it covered once I leave the hospital, otherwise it is going to be WAY too tempting for Scotty to want to play/mess with. I will use this PICC line just like I did my central trifusion line when I get back home and will most likely have to be back on daily IV hydration and electrolyte replacement therapy through Kaiser's home healthcare nurse. I already know how to flush it and do all of the day to day sterilization stuff as it is very similar to the two previous lines I had before (just a different placement, and it was less invasive to have it placed!) :)

The biggest concern right now is my GI system. With all of the issues I was having they were concerned about dehydration as well. We have avoided any dehydration issues so far and everything is good as far as that goes. The major issues now are a GI bleed of some sort and GVHD of the lower intestines. Just got back upstairs from the GI lab for my very first "upper and lower GI endoscopy with biopsy". They took biopsy samples of the upper GI track as well as the lower intestine. No visual issues with the upper end of my GI tract, but the doc who did the lower endoscopy/colonoscopy said she believes that the bleeding that I am experiencing is in the lower intestines and likely due to the inflammation/irritation caused by the GVHD.

GVHD of the gut is essentially is just massive amounts of inflammation which irritates the colon lining and causes it to bleed because it gets so "angry". Doc said aside from this, she didn't see any ulcers/lesions or polyps/growths...so that is good news. She took a ton of biopsy samples from my lower intestine and they are off at the lab under the microscope right now to check for viruses and to confirm/deny an official "GVHD of the gut" diagnosis. We should get the final pathology report back early next week (fingers crossed for Monday, but it will more likely be Tuesday). At that time we will know if it's GVHD of the colon, a virus in my intestines, or a combo of both.

In the meantime, they have increased my steroid dose from 80mg to 185mg/day (holy moley) as this is the first line of defense to try and get GVHD of the gut under some sort of control and reduce the inflammation that is causing the irritation/bleeding. ..so now we are really going to have to watch my blood glucose and for all of the major nasty side effects of high dose steroids such as muscle deterioration. It will be very important for me to make sure I am walking around the unit twice a day (28 laps=1 Mile on this unit) to avoid muscle breakdown. The PT/OT gal came in did her initial assessment and gave me my treatment plan (walking 1-2 miles worth of laps around the unit) as well as "theraband" exercises for my arms.

I thought it was really interesting that the doc and the nurse who did my endoscopes said that I required 2.5-3x the amount of sedation. Apparently red heads are known for that, but we are also know for snapping out of it pretty quickly as well. Go red heads :) lol. The procedure itself wasn't bad. I was more anxious before hand just because this was my first time, but on the list of "torturous medical procedures" that I have endured over the past 9 months, this one was pretty dang mild and near the bottom of the list :). So I have that going for me :). Lol

Looks like I will absolutely be here at the hospital through the weekend and into early next week. Best case scenario (although I have learned that "best case scenario should really be called "wishful/magical thinking" around here) is that I might be able to discharge home mid next week. Although it will likely be more like the end of next week or next weekend...depending on how the GI bleed and intestinal issues heal up and what the labs report early next week. We will see. Luckily, my MIL, Judy, was already up here in Denver this week helping watch Scotty during the day (daycare was closed this week for fall break). She has graciously agreed to stay through next week as well so that John can continue to work during the day and then come visit me in the evenings :)

In other news, we celebrated Scotty's first birthday on Sunday last week at a local pumpkin patch and farm. Had the Colorado family and a few friends join us and enjoyed cupcakes. Scotty had a little smash cake that I made him (pics are posted on Facebook for anyone who wants to see them) :). Scotty turned 1 on Wed (10/8/13) and went to the pediatrician for his well baby check up yesterday (Thurs). Here are his stats for anyone interested. :)

Weight= 22lbs 14oz. (72%ile on the WHO "weight for age" growth chart)
Height= 2'4.75" (13%ile on the WHO "height for age growth chart)
Head circumference= 17.99" (40th percentile)

So, we have a short happy healthy baby on our hands :) lol. He has gained about 4 lbs in the past 6 months since he was in to see the doctor last time and she has no concerns about his growth, so we are happy about that.

Scotty got several vaccines at his appointment yesterday but we had to delay a few of them because they are "live" and that puts me at risk when is get home from the hospital. So we skipped a few but he did get the rest of the reg 1 yr shots and his flu vaccine. Poor monkey. I was really sad that I wasn't able to be at this appointment (John and his mom took Scotty in since I am here are the hospital) and it reminded me of 6 months ago when I wasn't able to go to that well-baby checkup/physical because I was in the hospital for my transplant at that time. :(.

Really hoping that I will be able to go to his 18month well baby appt! :)

That's it for now. Since I am back in the hospital (and bored) I will probably update the blog a little more frequently (at least for the next week or two) :).

Love, Chellie