Cruising with unwanted teenage punks

So much has happened since I updated my blog two weeks ago, I apologize for not being more diligent about updating it for those of you who still might be reading it! 

First off, turns out that the GI upset I had experienced during and after Thanksgiving was not a flare up of my GVHD of the gut and instead it turns out I have Norovirus.  It took a week for test results to come back but long story short, the highly contagious virus that has been known to shut down entire cruise ships made it's way into my gut. :(. In a healthy individual, Norovirus lasts hrs to a couple of days and makes you very ill (many people believe that they have food poisoning when hey in fact have Norovirus according to my doc).  In an immunocompromised person like myself, the virus can stick around for months because my body has no way of fighting it off because my immune system is suppressed by meds on purpose to keep my GVHD under control.

What is really interesting is that the treatment for Norovirus in transplant patients is exactly opposite of the treatment for GVHD, so when we had originally thought my GI upset was related to a GVHD flare up, the doc increased my steroid dosage (wanting to suppress my immune system even more in an attempt to squash the GVHD process.  Instead, once we learned that I had gotten Norovirus, he needed to get me off the high dose steroid in order to allow my body to be less immunocompromised and fight the virus a bit more (but my doc still needs to keep me at a "therapeutic level" of immunosupression to avoid the chronic GVHD of the gut and skin that I have had over the past 4 months so it's at very fine balancing act.  The good news is that I get to pretty rapidly taper off the nasty high dose steroids that I have been on for the past 2 months since my hospitalization in October!  I am very happy about this as it will help my sleep, muscle weakness, and blood sugar issues that were all nasty and unwanted side effects from the steroids I had been taking.  Bad news is that since it will take my body a few weeks to clear all the steroids and then I will still remain immunocompromised it will take several s'more weeks-months for my body to fight the Norovirus and I could very likely continue to have symptoms of Norovirus :(. 

At least we now know what the issue is and my doc knows how to treat it and we are moving forward with that!  He said it is complicated and there isn't a lot of research or information in the evidence-based medical journals about BMT transplant patients who have GVHD of the gut and also contract Norovirus, but that it happens (even to the best of us:) lol and he has treated many folks with my same issues.  Makes me so thankful that I have a doc who has 30 years experience in this complicated transplant oncology business and specifically the GVHD complications that come with the process!  I love Dr. Nash!  :).

The other thing that I recently had to deal with was a scare with a bloody nose that started last Saturday and wouldn't stop.  We took Scotty to see Santa at one of our local garden centers that had advertised pictures with Santa and also had live reindeer.  It was FREEZING (literally) here in Denver last week and last weekend, and I think the cold dry air mixed with my irritated mucous membranes throughout my body (thanks GVHD:), caused my nose to start bleeding when I rubbed it (it was itchy when we went from the super cold to the warmer tented area that had those big space heaters to see Santa in his sleigh with Scotty. 

I've had on and off nosebleeds throughout his process (after transplant, a few during the summer and a few in early fall, but nothing like this one).  All of the other nosebleeds I had, stopped within half an hr or so.  This time around, it wouldn't stop because my platelets continue to be low (it has been since October when they started me on the supplemental immunosuppressant).  I was also taking a blood thinning medication because of the blood clot in my arm from the PICC line they put in while I was hospitalized in October.  Long story short, this was a nosebleed that wasn't going to stop/clot with home treatment because my blood was so jacked up. :(. I realized the seriousness of the nosebleed after trying to treat it at home for several hrs with minimal success...ended up calling the on-call doctor at the clinic and he instructed me to come to the ER affiliated with the clinic...so I drove downtown to the ER and they had to "pack my nose" in order to get the bleeding to stop.  Very unpleasant experience if I do say so myself.  Even more, I had to leave it in for several days to ensure that the bleeding would stop since my body was still trying to clear the anticoagulant medication I had been taking.  Having something shoved into your nose and then inflated like a balloon to create enough pressure to stop blood flow in a vessel is not fun.  I had a headache behind my right eye and sinus all weekend from the pressure of the balloon thing they put in my nose.  :(.   Finally got my nose unpacked on Tuesday and wouldn't you know it, the sucker continued to bleed (although much less) and the Doc who unpacked my nose said that is very common for it to continue to "trickle" because when they unpack it, it partially dislodges the clot that had formed while it was packed.  LOVELY! :(. I must say, I was not a happy camper when I was sent homes till "trickling blood" and told that "it should stop in the next few hrs".  They sent me home from the ER with a nose clamp and some nasal spray and told me, it should be fine in a few hrs but to come back if it didn't stop and they would have to repack it!  I was upset and frustrated seeing bright red blood coming from my nose again (even in smaller amounts...seeing blood coming from your face is scary no matter what the cause)!  Thankfully the "trickle" stopped around midnight (can't tell ya how nervous I was to take the nose clamp off each time to check it every couple of hrs once I was home, but my prayer and the prayers from family members and a few close friends who knew what was going on Tuesday night were answered and it stopped while I was propped up sleeping sitting up on our couch.  Hallelujah! :). I have been trying to be EXTREMELY careful not to touch, rub or itch my nose since then and have a referral to see an ENT specialist who might be able to cauterize "the bleeder" as I am affectionately calling my little nose blood vessel that acts like a teenager who likes to throw unwelcome parties (nosebleeds) in my nose! :) lol

So, I have been dealing with the cruise ship stomach bug (minus the actual vacation/cruise), BUMMER!, and a blood vessel in my nose that acts like a punk teenager throwing unwanted and disruptive "nosebleed parties".  I am over it! :) lol

Bright side is that the nosebleed is under control for now, I am off the anti coagulation meds (did an ultrasound of my arm on Wed and doc said it was reasonable to consider ending the blood thinner since there wasn't much evidence of the clot still).  I chose to weigh the risk/benefits and he agreed to stop the Coumadin.  (I am really happy about this progress off of this medication because blood thinning meds in addition to my low platelets freak me out and those meds scare me in general!  They were causing me to bruise randomly, etc...no fun.

The other nice thing is that I am aggressively tapering down on the steroid medication so that means that my sleep should improve...SO looking forward to that!!!!

So, that is a glimpse into my world over the past two weeks and why I have been so busy (have had clinic appointments much more often, still doing daily IV infusions (4hrs each time) through a new PICC line to ensure that I can absorb certain essential electrolytes and then dealing with the nosebleed/blood lot issues. 

Despite nearly every other holiday/birthday/special day (anniversary) being affected by my health issues this past year (seriously, when I think about it every holiday has been messed up by chemo, feeling sick, being admitted to the hospital, GVHD flare ups and Norovirus, I am praying for a "calm Christmas".  We are hoping to go down to my parents cabin for a few days and spend some time with them just relaxing and enjoying the holiday.  So far, I am on track and Dr. Nash has said I can go (if you remember, we tried to go down to the cabin in September to celebrate our anniversary and ended  up having to come back the next day because of my skin GVHD).  So, any prayers/thoughts/juju/vibes you can and want to send my way that we can spend a relaxing few days down there for Christmas would be greatly appreciated!  I would love more than anything to just simply spend the holiday with John, Scotty, and my Mom and Dad...in their cabin down in Pagosa.  It's something I have been looking forward to all year and really hope to make a tradition for Scotty (Christmas at the cabin).  Someday (probably way too soon) he will be old enough to enjoy building a snowman, sledding, and learning to ski/snowboard down there at Wolf Creek... I am looking forward to those years but this year, I simply would love to be able to start the tradition and relax down there for a few days with my family, drink hot chocolate by the fire stove and snuggle up on the couch with my boys while we watch the snow fall out by the river!  Two more weeks till then, and I am really hoping things can stay on track so we can make the trip! :)
-Chellie

Life on board the roller coaster of recovery

Haven't written in a while, and that was because I was so busy with life.  Holiday baking, Christmas season prep, clinic appointments, spending time doing all of my physical therapy, medication taking, spending time with my boys in the evenings when they got home, etc. :). Well, unfortunately things have slowed down to a snails pace again and I have have had to hit the brakes due to a flare up of GVHD again.  :(

I had been feeling much better until Wednesday evening when I came home to find John was violently ill with some sort of stomach issue (we now think it was food poisoning but at the time I was extremely worried it was the stomach flu).  I got home from a late clinic around 6pm from a late appointment with Dr. Nash and immediately had to take over supervising Scotty so John could take care of himself (felt terrible that I wasn't able to devote all of my care to him!) as he was so violently sick.  It was a rough evening in the Voss house on Wednesday night to say the least.

 

Thankfully, neither Scotty or I "caught" anything from John (again, why we are now thinking he had food poisoning), and he felt better the next morning (Thanksgiving)...however I think the stress of having a violently ill husband, worrying about possibly catching the stomach flu and having to take care of Scott all by myself when I am still so weak that I can't even carry him upstairs myself caused my body to become overly stressed and that in turn caused a flare up in my GVHD.  (This is my theory based on many conversations I have had with one of the on-call docs at CBCI the past 2 days.

 

On Thanksgiving morning John woke up feeling better and I started experiencing some lower GI symptoms (very similar to the beginning stages of my last GVHD flare up that required the 17 day hospitalization back in October.  We cancelled our Thanksgiving plans to go down to Pueblo (despite the fact that I had done TONS of cooking for the meal on Wednesday) :(. And we stayed home so I could rest and be near the clinic if necessary.  By 12pm I had to call the on-call doc who I was afraid was going to tell me to come in immediately.  Thankfully, I had seen this doc several times and he knows me.  I explained everything and he said that we should try to increase my prednisone (steroid) dose by 10mg and "wait and see" if that helps a bit.  I wasn't having any nausea/vomiting or pain, so he wasn't too concerned at that point because I had only been symptomatic for about 6-7 hrs and he thought we might be able to "kick it" with an extra 10mg of prednisone).  He told me to wait 24 hrs and see how things go (of course calling back if I started vomiting or any major new symptoms came up).

 

Unfortunately our plan didn't work.  By Friday early afternoon I was no better (despite resting all day long and sending John and Scotty down to Pueblo for a belated Thanksgiving meal (thanks for delaying your Thanksgiving by a day Judy, Kate, & Anne, so that Johna me Scotty could join you guys!).  When I talked to the same on-call doc late yesterday afternoon he said that he thought it was time for me to come into the clinic to be seen by a doc because he was worried about the fact that I could be getting dehydrated and not be absorbing very important medications correctly with all the GI upset I was experiencing.  Of course, I just had my PICC line removed about 12 days ago, so I have no IV access right now and that took one of our options for home hydration fluids off the table immediately.  The doc informed me that the clinic was closed and that he didn't think it was severe enough for me to go to the ER... But that he wanted me to come into the office for their "after hrs/weekend" clinic first thing on Saturday AM and he mentioned bringing a bag packed just in case they decide that they have to admit me to the hospital and switch my meds over to IV and ensure I am hydrated and getting the replacement electrolytes my body needs (many of my meds cause my body to "dump magnesium and potassium" which are really important to nerve and heart function...and if levels get too low you can have seizures and all sorts of scary stuff can happen).

 

I agreed with the on-call doc that I didn't need to go to the ER (but I would if I started vomiting) and he agreed that our best course of action was an 8am appt at their "weekend clinic on Saturday morning...with me coming packed for an admission (just in case).  I must admit, I bawled big alligator tears when I got off the phone with him despite the fact that I know he is just trying to make sure that I am okay and ensure that we catch this  as early as possible this time around.  I was terrified of being admitted and having to be away from my boys for weeks again!

 

I got to the clinic at 8am as instructed this morning and the on call doc I had spoken with last night had already texted the nurse in charge to expect me first thing this morning.  They drew tons of labs and within a few minutes of getting results I saw the medical director who happened to be the on-call "clinic" doc this weekend (different doc than I had talked to on the phone).  He assured me that we could do this outpatient....at least through the weekend (whew) despite the fact that they pulled my PICC line 2 weeks ago.  He said that he wanted to "slam me with 2 massive doses of high volume steroids and shut down the GVHD flare up if possible so I am here at the clinic getting an infusion for 4 hrs of extra magnesium/potassium/fluids (because I am dehydrated) and 120 mg of steroids.  I had just tapered down to 20mg and was starting to feel like myself again (sleeping a little better, muscle weakness was getting better) and now I am back up to 120.. But if we can manage it this way and keep me out of the hospital then I am willing to put up with the side effects again.  This dose will cause me to be diabetic again (I had just "graduated from glucose monitoring and insulin injections last week) but have to start them again as soon as I get home this afternoon!

 

I will have to come back into the clinic again tomorrow morning at 730 am to get the same thing (4 hr infusion of fluids/electrolytes and massive dose of steroids).  Thank The Lord for the weekend clinic and the nurses who work the weekend hours that allow this as a possibility because otherwise I would be upstairs on 4B admitted to the hospital for the exact same thing but I wouldn't be able to leave and come back in tomorrow!  I am so relieved that Dr. Matous, the medical director, was willing to do it all outpatient this weekend as he easily could have just said, let's  admit ya and do it that way...but he knew how important it was to me to be home with my family.   He is leaving it up to Dr. Nash on Monday, when I come back in for my regular appointment, whether or not to admit me to the hospital but hopefully by then we will be able to arrange getting a more permanent IV access/line put in again and I will be able to do the infusions over 6 hrs at home instead of coming into the clinic for 4 hrs everyday and there won't be a need to admit me to inpatient! :) I really don't want another PICC line (because it cause so many issues with the blood clot and was a total pain in the rear to deal with) but I will take that in a heartbeat over having to go back into the hospital!

So for now, I am sitting in the clinic downtown waiting for my first infusion of the weekend to wind down.  I have about an hr and 45 minutes left before I am cut free to return home to my boys.  I will gladly bring my hospital bags that I had packed back into the house and breath in the smell of baby shampoo from Scotty's hair when I get home and just say a thank you prayer for allowing me to be home tonight with my family!  So grateful to Dr. Matous for realizing how important it is for me to be home with my boys and how emotionally upsetting it is for me to be away from them when I was in the hospital a month ago.  He is such a compassionate doc and I love how he just makes it work for his patients! 

I will be back at the clinic bright an early (7:30am) for the same infusion tomorrow...and with all the steroids I got today, I definitely won't be sleeping much tonight...so I plan to make some homemade breakfast/baked goods to bring in to Dr. Matous and the weekend clinic nurses.  I have been trying to decide if I should make fresh blueberry blueberry muffins with crumb topping, overnight cinnamon rolls with my favorite light fluffy cream cheese frosting, or if I should do something like homemade bagels, fruit kabobs, and coffee.  You know me, I love to bake and with 120mg of steroids in my system this afternoon, you can bet my little kitchen will be busy tonight while the rest of the house sleeps peacefully and will wake up to the smell of something delicious probably just as I have to walk out the door @630 to make it downtown and to the clinic by 730 to start my infusion tomorrow. :). 

-Chellie

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! :)