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November update

11/26/2013

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Yes, I understand there hasn’t been a formal “Sarah-status” update in a while, so I totally owe you one. Almost two weeks ago, I started on a four day schedule, wahoo! I mean, what’s a girl to do with all this newly acquired free time from the hospital? 

Well, that was kind of short lived. Last week instead of only going in twice, I ended up needing to visit the hospital four times for appointments and unanticipated transfusions. I’m fine but wasn’t feeling particularly good. Aware that my blood levels felt low, I called up my office to see if I could come in and my suspicions were confirmed.  On my bonus trips last Wednesday and Thursday, I got platelets and then a RBC transfusion. I mean, I really just wanted to spend more time in the recliner watching daytime TV and getting to know the nursing staff. ;-) Hopefully moving forward, those little extra adventures won't be required, especially since I’ve become so adept at flushing and changing my own PICC line dressing at home!

Overall, my marrow growth is making progress. Slowly but surely, my ANC is doing a little dance between 0.6-0.8 recently (it got as high as 0.99, then chickened out, normal range is 1.8-7.7 10e3/uL), these silly, vacillating neutrophils need to bring some friends to the party! I’m considered no longer severely neutropenic (hello, well-washed salads!) but still am neutropenic and need to be careful and well aware of my surroundings to NOT catch anything. Sorry, cute little children, but right now your germy-ness, is not welcomed in up close and personal encounters. On the blood front, I’m still needing transfusions but it looks like I’m having a little bit longer frequency between platelets, which is certainly good news! Fingers-crossed this trend continues and that my RBC transfusions start to spread out as well (currently every two weeks). 

After seeing my oncologist today, it was decided that I’m at a good place to start with Neupogen, a granulocyte colony-stimulating factor, a.k.a. neutrophil grower. Hopefully this can help to kickstart some more growth and help move me out of the neutropenic zone! I had my first shot today after receiving platelets and am hopeful for the boost. In talking to my doctor and doing some research, the most common side effect to look out for are bone (!) and muscle pain. So yeah, I’ll definitely let them know if I get bone pain because that doesn’t particularly sound pleasant, if it's anything like my bone biopsy.

Regarding “what’s the big picture?”, it looks like I should be able to go back to the sunshine in January at-a-date-yet-to-be-decided. If all goes well and the need for transfusions decrease to a point that my PICC line can also be removed. Yay, for the ability to take showers normally! Which, in my mind, would also mean that I could then start slowly to run and throw some more arm balances into my yoga practice again...per doctor consent....and listening to my body.


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Busy

11/23/2013

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“Human freedom is choosing one’s attitude in any given set of circumstances” -Victor Frankel

Do you find that the only way you can slow down is by getting sick? Are you pushing yourself so hard, to the edge of your limits, that it takes illness for you to relax or commit to relaxing? You may be saying to yourself, “Why no, I have no idea what you mean?...” Liar or should I say Liars! I’m pretty sure that I know at least five people who will read this statement and to whom it is completely applicable, myself included.

I mean, seriously, I had to get really sick and be handed a veritable fact of a diagnosis (twice) to be like, “Okay, so I guess I’ve actually got to slow down a bit”. Duh.

Why does the thought of not doing something kind of freak us out (or at least some of us)? I really like to blame it on the highly, device-connected society that we’ve become and the idea that you always have to rush, rush, rush, doing more and quicker than before...kind of an irony then that you’re reading this online...but moving on...So while in my yoga classes I’ve strived to teach students to slow down the “monkey mind” and allow themselves to relax and let go in their final savasana, if not beforehand, I was not necessarily practicing what I preached. Wanting to help others find more balance and peace in their own hectic schedules, I managed to continue to push myself through the grind of both a physically and mentally taxing schedule, working towards a specific, personally appointed deadline. I confess, I was leading a double-life at times, one on and off the mat. But, I kept doing it, right up until there was undeniable proof that I had to stop. Even the often shared article, The ‘Busy’ Trap, while much appreciated didn’t seem to abate my fervor. Why? Because as I’ve said before, I’m a planner. I had this master timeline that I was following and I was just focused on running, trudging, or dragging myself to meet it. Oops.

It’s kind of like Karma, or fate, that to proclaim the virtues of slowing down and taking time to simply be, I had to have it forced upon me. I’m essentially living the dream of a permanent time off, so why did the thought of not “doing” something totally freak me out? Because no matter how rationally I talk myself through the benefits of rest and this period to figure things out, I still have this little (or loud depending on the day), deeply imbedded voice of guilt that says, “I’m wasting my time”. So what to do, do I create work to rid myself of this guilt or do I fight back? Well, I kind of do both. I like to call my activities "work", which in reality or monetary means they do not quantify as, and to also formally impose rest upon myself. I like to pretend that I’ll actually wake up for my silly early alarms, when in fact, I’m more than likely to snooze twice or turn them off. When I do indeed have to wake up really early to get to the hospital, I do, but why falsely believe that I need to on an off-day? Because, in some sense, it just makes me feel better. And really, isn’t that part of the healing process, too? Working to feel better about myself, the massive transition that my life has taken over the last few months, if not 2013, as a whole? So in addition to asking myself, “What do I need to do today?”, I also ask, “What is important?” and hopefully those two questions coincide and converge. As I’m finding, they frequently do when I’m allowing myself adequate time to be free to think, journal, and meditate, activities that in the past might have sadly been truncated.

So please, if not for your own health then as a favor to me (wink, wink!), take a little time out of your day (morning, noon, or night) to ask yourself, “What is really important?”. Ask the question and then write down the response. Then close your eyes (because you are sitting down in a chair and NOT multi-tasking), take a few breaths (deeply, if you can) and ask again. Did it change any, become more developed? If you have the time and/or patience, explore it, maybe even meditate on it. If you’ve never stopped to question the “doing” and instead of simply followed a course, trust me, it’s a totally worthy effort.

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Eavesdropping

11/17/2013

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Hospital eavesdropping in transfusions (wait, you didn’t hear me say that!) tend to veer in a few directions: 
  1. Sad-hearing doctor/patient conversations that make you realize the fragility of some and the fears that they may be facing, makes me realize how fortunate my situation is and to be grateful for all of my support.
  2. Funny/humorous-patients but usually nurses can lighten the mood and make you smile or laugh with the stories they tell.
  3. Serious or angering...and then sometimes you overhear stuff that you just want to block out, to tell them to shut up or to set them straight...or maybe that’s just me. Typically I feel this way when some patient is swearing up a storm or being particularly lewd and I simply can’t control the situation or my location. 
At the time of this revelation of conversational categories a couple weeks ago, I was feeling in category #1 because of a patient located two stalls beside me. It seemed like the medical staff and the patient’s family were trying to keep his spirits up and dissuade his fears on getting platelets...Apparently it was supposed to be his last day of chemotherapy but because of his levels he needed blood product and was going to have to finish his chemo the following week. He sounded so bummed and his platelets were low but quite a bit higher than mine, so it was as a precaution and out of safety-totally as a protection, not at a dangerous level...It had me wishing I could go over and talk to him, let him know that he was going to be okay and not to let the thought of a one week delay push him into despair. Getting platelets isn’t so bad...and trust me, I should know. 

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Donating 

11/15/2013

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Well it’s that time of year, for giving, gratitude, and doing good. So, in light of this season, it seems perfectly appropriate to make a request for the one of the best types of giving possible. The giving of life, a future to others in need. No need to buy anything or send in a check, all that I request is a little bit of your time, and possibly some of your, you know, spare blood.

No worries, you probably have plenty of it circulating around through your body at this very moment. So if you’re able to donate blood and are not excluded by any of the eligibility criteria, I would like to strongly encourage you to donate blood. If you think that your donation of blood won’t make a difference, because hey, you’re only one person, so no big deal if you choose not to! Consider the impact of your voluntary donation. Human blood is produced only by the human body and cannot be synthesized, currently. Only blood donation can meet the needs of patients with blood loss due to major accidents, diseases, or surgery. Every time you donate, you can have the personal satisfaction of knowing that you are helping another person, if not possibly saving their life. And that is a very powerful thing for which as a recipient of blood products, I am very thankful for! Just think, your blood could possibly be helping me!

Quick facts:
-The need for blood is constant, every two seconds someone in the U.S. needs blood.
-More than 41,000 blood donations are needed EVERY DAY.
-A total of 30 million blood components are transfused each year in the U.S.
-Type O negative blood is the universal donor and can be transfused to patients of all blood types. It is always in great demand and often in short supply.
-With typical blood (or whole blood) donation, you have the potential to help three people via it’s transfusable components: red cells, platelets, and cryoprecipitated AHF (plasma).

While I’m on the topic of donating and all, another important but EVEN EASIER thing to do, is to join the Be the Match Registry, as you could be a possible match for a patient in need of a bone marrow transplant. While a bone marrow transplant is something that I fortunately am looking like I will not be in need of, getting register is something that I really encourage anyone between the ages of 18-44 and in good health to consider doing. You can register online here or find a local drive (typically also with a blood drive, how convenient!). What basically happens, is they will take a giant Q-tip to swab the inside of your cheek, yes, it’s really that simple. While, I do understand that this is not for everyone, if you are not restricted due to medical reasons this is an incredibly unselfish gift that you could give to save someone’s life. By registering you are taking the first step towards possibly being a cure for patients with blood cancers and other marrow disease (such as Aplastic Anemia).

Quick Facts:
-1 in every 540 registry members in the U.S. will go on to donate bone marrow or peripheral blood stem cells to (PBSC) a patient.
-Every 10 minutes, someone dies from a blood cancer.
-70% of all patients who need a transplant don’t have a matched donor in their family.
-There are two methods of donation: PBSC, which is a nonsurgical procedure and the most common way to donate, and bone marrow donation, which is a surgical and usually outpatient procedure.

So, this is me standing on my little soap box asking you just to give this a little bit of thought. If you can donate, awesome. But please at least give it some thought, because you never know who you could help in the process. After donating blood a few times myself, it's kind of funny to be a recipient, so I never take it lightly. Every time I have a transfusion, I am grateful for each person who decided, "Yes, I think I'll donate!" and hope that I can reciprocate the donations some day down the road.


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    A redheaded, yoga-lover/teacher, runner, and wife currently dealing with a little medical setback.

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