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