Fear, it’s typically a sensation we try to avoid and hide from others. Being vulnerable, letting people in, and admitting that you actually fear something is downright scary. Is this my way of admitting that I am afraid of Aplastic Anemia, absolutely not. I am however afraid of zombie and graphic horror movies in general. You will never catch me watching an episode of Walking Dead with my husband, although they are neatly accounted for in our Netflix queue...I know my limit and don’t care to test it. 

So when is it okay to subject yourself to something that elicits fear? Or, if you are like me, that mounting feeling of not having control and wanting to have a “plan” for something unknown? It’s okay when the “unknown” or dealing with the fear will help you move forward on a path to wholeness. I can’t deny that I’ve got Aplastic Anemia or give up on looking and moving forward towards wholeness. It’s not a choice to be “lazy” and forget to wash my hands, flush my lines, or take my medications responsibly. Who does that hurt? Me. And at this time, I am no longer willing to hurt myself to achieve “deadlines” or goals, typically self-imposed or socially pressured to fulfill this unattainable ideal of “perfection”. Perfection is overrated. Perfection doesn’t comfort you, send you care packages, or sleep in a chair beside you when you’re hospitalized. I’ve decided that I will take my imperfection, quirks and all, as they are much better company along this road to recovery. I accept that there are things that I cannot do right now, that will have to wait until I’m healthy, and that I may never do in my life...and you know what? That’s totally okay. Because, I am no longer willing to go rushing my life away. (I’m too clumsy and have far too many bumps and bruises from this manner of lifestyle). Life is too short to be spent regretting past decisions, so just stop it. Move forward and only look back upon the good memories and LEARNING from your mistakes...see that, learning, it’s a far more important a tool than self-shaming. Guilt and shame can be harming, so stop using them that way. I’m not telling you to be narcissistic but if you are inclined to dwell and let these things fester, let it go. Yes, easier said than done, but the more consciously we acknowledge how we’re using them on ourselves or toward others, the easier it is to stop using them to cause pain. So anywho, where has all this babble lead me to? I’m learning, trying to live life slower, and working to face this silly fear of my plans blowing up in my face. Right now I don’t have a hard-set timeline, as all is dependent on how my body reacts, and that manner in which I allow myself to heal. No rushing, or shortcutting this process. My bone marrow holds the ultimate hand of cards in this game of poker, and I’m going to let it take as much sweet time as it needs to lay that hand down. Because I want to be there on the other side of this treatment process, recovered, healthy, and living the life that I currently have on hold. And I can’t be angry about that, because anger gets me nowhere but down and that is certainly not a place I want to be in. Life is too good and I have felt far too much love and support from family and friends to let myself give up. Quite frankly, giving up has never been my style, so why start now?

As I sit here getting a transfusion of platelets and having had packed red blood cells (RBCs) two days ago, I figure that it is probably a good time to talk about what it is like to get a blood transfusion and what the process entails.

In the modern medical world when you are getting a blood transfusion, it is typically only a specific component of the blood (red blood cells, white blood cells, plasma, clotting factors, or platelets) instead of whole blood. Over the course of my treatment so far, I’ve been receiving both platelets (frequently) and RBCs. To track my counts, I have labs done every other day, so when/if my levels are too low, then I get a transfusion. Since I’m not in an inpatient setting where the medical staff can more closely monitor my levels, my criteria for requiring transfusions doesn’t let me drop to dangerous levels. My criteria for transfusions are that if my Hemoglobin (Hgb) is at or below 8.0g/dL, I’ll need RBCs, and if my platelets are at 20 (10e3/uL) or below, I’ll need to get platelets. Pretty straight forward. For reference of standard ranges, Hemoglobin should be between 11.2-15.7 and platelets between 163-369 10e3/uL. 

When the medical team gets my blood results back and see that I need a transfusion, they place an order for the platelets or RBCs and the processing begins. If we’re lucky and it’s available in the hospital’s blood supply, it won’t be too long of a wait, but if they have to order it from the blood bank downtown, it typically takes a while longer.

Before donor blood can be given, they test it to make sure it matches up with your blood, just as a confirmation of the blood typing of both parties. Then the donor blood is filtered and irradiation, as a precaution to graft-versus-host-disease and removal of any lingering antibodies. Because of my immunosuppressed state, the blood I receive is also tested for Cytomegavirus (CMV) and must be CMV-negative.

As a precaution and because of a previous platelet reaction, I receive premeds before the start of my transfusions to help prevent an allergic reaction, typically consisting of acetaminophen and diphenhyramine. If I’m to receive platelets, they may also give me an IV steroid, if there is concern that I may have an anaphylactic response. Having a Hickman catheter or a PICC line makes the transfusion so much easier. The nurse only has to connect the IV to one of my ports and away we go! My vitals will be taken before we get started and then often throughout the transfusion to make sure nothing spikes/drops and that I’m not experiencing any adverse symptoms.

While a blood transfusion can take a while (about 1.5-2 hrs/unit), platelets can go in pretty quickly, as little as 15 minutes, as there is much less volume to take in. Despite quicker transfusing, platelets are also more likely to cause an immune response as mild as chills or as extreme as anaphylaxis. While a full-fledged allergic response is not typical, it can occur when getting more frequent transfusions. And once you experience it, you certainly never want to experience it again...hence the necessity of premeds and making sure to notify the nurses of any funny sensations. Remember, don’t be a hero!

Can you tell when you’ll be needing blood products?
Before getting my transfusion, regardless of the labs, I usually know when my hemoglobin or platelets are getting low. When my platelets are getting low my bruising gets worse, I start to have more random blood vessel spotting (like on my tongue), and I bleed more easily with poor clotting. On the other hand if my red blood cells are low, I tend to get lightheaded and dizzy more easily, feel more tired overall, and have a faster, more pronounced heartbeat. Neither situation feels particularly good.

What does it feel like to get a transfusion?
I notice that when I get RBCs, it’s very easy to tell it if it’s going too quickly. I start to feel chest pain and it begins to get hard to breath. So speed for me, whether for red blood cells or platelets (especially), is really an important factor of how well my transfusion goes. I like to remind myself that slow and steady wins the battle against allergic reactions and to just think of the process as a marathon instead of sprint. For example, I had a marathon RBC transfusion on Wednesday (6.5 hours!), as a result of reducing the transfusion speed. Whether getting platelets or RBCs, I find that I do feel the fluid coming into my body and that my hands tend to get tingly but that the more frequently I've gotten transfused, the more used to the sensations I've become. 

How do you feel post-transfusion? 
I typically feel better after getting a transfusion but find that it takes my body a while to adjust to the change and about 24hrs for my body to adapt to the large fluid intake of RBCs. While I may feel energized after getting platelets, if I overdo it with activity afterwards, I’ll end up tired the following day. So if nothing else, I’ve learned that it’s a fine balance in watching my energy levels.

10/20/13: On Hope

This is hard, I’m not going to lie and say that it’s easy to be hopeful and happy all the time. I put on a happy face and present a strong or maybe a sarcastic persona for most of my “public time”...it’s at the end of the day when I’m winding down and crawling into bed that the facade begins to crack and that beacon of strength feels like a pen light 20 miles away. Tonight I cried. I cried because the rash is still on my legs and upon further inspection, the back of my knees are not looking so hot-rashier and possible bruising at the joint crease? And, my knees aren’t feeling so great, sore and uncomfortable...which just makes me worry and takes me to having to acknowledge that I must be pushing it still...moving too quick on the treadmill walks or maybe taking the speed to high? This just makes me so sad, because all I want to really do is run and I can’t. Because I can’t ‘apparently’ even go walking without hurting myself(?!)...and this sensation just hurts my soul.

I love to run, to just put my shoes on, hop on a treadmill or a path and move, finding an escape from whatever is worrying or stressing me out. Allowing me to reconnect with my body, as I feel that little bounce and forward motion while my legs engage and my core stabilizes me to keep my center. And the air...that’s part of the experience- fresh cut grass, cool dewy mornings, and especially the early morning crispness of fall...I love those smells but even more so on a run, because it’s alone time with my own thoughts or my music or to converse with a running buddy.

I cry tonight because I miss it, I miss the freedom to just lace up and head out the door. To not be confined to a house and always wearing a face mask outside. I don’t want to fail at this recovery. I don’t want to harm or delay my return to my husband, to starting our life together. I have to keep faith, hope, and prayer in my heart and believe in the strength of not only myself but also God to help me heal, because I can’t do this alone. As hard as I try to do it, push it, make it alone, I need support to make it through.

Back in college, when I was having a hard time my sophomore year, my Dad gave me this beautiful gold anchor necklace for Christmas. The anchor is the symbol for both my college sorority, as well as representing hope, so it was very apropos. The hope that I would overcome that trial and this as well, they’re just chapters in my life book. Hope is what keeps us going and helps us move forward, growing and working to be better for it. I hope I can be better from this experience, that I can intuit what my body needs and be a better listener to my gut instincts without letting my head get in the way. I hope that before too long I’ll be able to get back to my running, exploring my new community with great appreciation for every stride I take.

9/10/13: 
Today, at this moment, I should be writing this while enjoying my new home, a new life on a tropical island. BUT, instead I had to cancel that ticket and am “home-bound” in the home I haven’t lived in for over nine years...P.S. That really kind of sucks. As one who never moved back home after moving away (far away) for college, the last thing that I could have imagined at the ripe age of 27 years, was that I would be newly married and yet living in my parents’ house, some five time zones and about 5,000 miles away from my best friend…Needless to say, I didn’t think that Aplastic Anemia would be wiggling it’s way into my life plan and timeline of events.

Ugh, so with that vent that I’m not in the physical location that I wish to be...paddleboarding or eating oh-so-fresh sushi in my oh-so-new apartment with my wonderful new husband…

The last I could have imagined two weeks ago, as I sat on my friends couch in St. Louis was that life was about to “get real”. I just thought I had a bad case of strep, bummer, but something that I could handle with the right antibiotics. Super tired, hard to breath, and very painful I managed to visit a Walgreen’s clinic (confirm the strep and get meds), get my car shipped off, drink lots of fluids, and spend plenty of time around germs at the STL airport waiting for my flight. Felt like hell, but you gotta do what you gotta do...or so my previous motto had gone…Luckily for me, my in-house diagnoser did not like how I was doing, nor the “odd” lymph gland swelling that I was experiencing, which I pointed out since it was totally something new in repertoire of Strep (?) symptoms. Less than a day later, I was admitted into a local hospital after a walk-in clinic CBC panel that unveiled some troublingly low immunity. Needless to say, this was also my very first in-patient hospital experience and extremely unexpected...Heck, after I had my labs drawn, I went grocery shopping with my mom and was just sitting down on the couch when I got a call asking if I was still at the clinic-um, no, the message to stick around wasn’t relayed. After three nights and lots blood work and tests, I felt like a medical anomaly. 

Flash forward to today, ironically the day I was to leave for paradise, I had blood work and a referral appointment to a hematologist/oncologist at the cancer clinic at my Dad’s hospital. The anticipated treatment plans were discussed and detailed as well as the status of my condition and what this all means. This is truly when the realization that I will not be leaving the Midwest in the near future really hit home, like hopefully before the holidays. But, I’m super healthy except for one little detail of an autoimmune disease and completely susceptible to infection. The course of treatment involved will include the use of ATG, Cyclosporine, and Prednisone via a PICC or Hickman line while admitted for 3-4 weeks. If this goes well, which since I’m healthy and young is what I’m hoping for (!), and it works to resolve the problem (70% effective), I should be followed for the next couple of months and then continue steroidal treatment with continued follow up for bloodwork for 6 months. Essentially we are hoping to wipe-out and reset my bone marrow. If this course of treatment doesn’t work, as is the case for about 30% of those treated, then I’ll need a bone marrow transplant from a donor. Sad news is, is that this is a great prognosis IF you have a sibling able to donate...bad news for me, is that I do not have a LIVING sibling. Yeah, this news really sucked and when mentioned in front of my mother, totally got her crying and has been something that I have had to ruminate on for the rest of the day. Granted, 10 years ago when my brother passed away, I didn’t think “Damn you, now I’ll never have a perfect bone marrow donor!”...yeah, totally didn’t cross my mind. Anywho, back to the marrow, without that match they have to consult with the donor listings to look for an unrelated match and see if they can find the perfect fit. Granted, this is the backup plan, they’ll be getting started on the search to move the process along, if needed. So where does this leave me? Focusing on patience (as consistently repeated by both my father and husband) and letting go of my expectations of schedule or scheduling my life, as this is just something that has to be treated. I’ve gotten the weekend off (wahoo!!) and won’t be admitted into the hospital until Monday, so I can enjoy some time with the husband who arrives on Thursday morning. We have some “wild” plans to escape my parents’ house, stay at a hotel for a couple nights, and visit some friends- who are not sick and in an acceptably sterile environment. My life has become focused on staying aware of the health of my environment, assuring people that I’ll be ok, and getting a grip on what the heck is actually going on with me...Oh, and not to mention complete emotional/mental boxing within the safe confines of my mind, while trying to make everyone else feel better about the situation. Breath, that is all that is needed for me tonight, to let go of the anger that I am feeling towards predominantly myself, to the situation, and to wanting it all to be different.

10/13/13: A Month in Reflection

So yeah, that happened. Time sure flies by when you’re having fun! Just kidding, I don’t really take this all that flippantly. But, it is rather crazy to think that all of this weirdness, officially started on August 29th, when I had my first blood panel taken at the walk-in clinic...and then was immediately hospitalized...after mistakenly leaving the clinic and going grocery shopping with my mom of course! Which by the way is really kind of a funny call to get, “Hello, Sarah? Are you still at the clinic?”

Anywho, the real point of all this, is that I’ve only known, officially, of having Aplastic Anemia for the last month. There was the inkling before, from the local hematologist/oncologist, but going up to see the new physician was the clincher diagnosis. Now don’t get me wrong from the thoughts from that day, I was totally cool for most of the day, it was really just all of this post-appointment car trip time and some of the evening when all this was going on in my head. Since then, I ended up only having to spend the following Monday-Friday in the hospital for the immunosuppressive therapy with anti-thymocyte globulin (ATG), instead of the anticipated 3-4 week stay. Because I responded well to the treatment over the course of the week, they thought it would be better if not overall safer, for me to be home while immunosuppressed instead of in the hospital next door to some particularly infectious patients. Post-ATG, I had the pleasure of receiving medical supplies and having a couple of home nurse visits to teach me to flush my Hickman catheter and change the sterile dressing. 

By the numbers, I’ve logged 26 appointments including:

9 platelet transfusions, going from every other day to about once per week (woohoo!)

1 anaphylactic response to said platelet transfusion…never want to experience again

2 Red Blood Cell transfusions

2 hospitalizations: 1 planned (ATG treatment) and 1 unplanned as a result of catching a virus

A few lessons learned: 

1. “Don’t be a hero”. Pushing through is not the name of the game, especially when doing so results in pain and hospitalization. Call your doctor/nurse and let them know what’s going on, even if you think a sore throat isn’t a big deal. Your immune system is nonexistent, so it actually is a “big deal”. 

2. Strenuous exercise and weightlifting are not your friend (right now). Oh, you’re an athlete and still in good health, why not pursue some light weight lifting or box step-ups? Too soon? Yeah, totally too soon. Your doctor won’t appreciate the risk that puts you in, nor will you, when you feel lightheaded, dizzy, and pretty darn awful afterwards. Plus, you’ll learn that doing so can put you at risk for bleeding in your joints, among other things...I think I can wait.

3. Chocolate milk (of any type) makes cyclosporine so much more palatable...not to mention the same for all of my medications. This little gem is thanks to my awesome RN from the most recent hospital stay. She was a wealth of tips and tricks! 

4. And on that note...Treat ALL medical staff/hospital staff with respect, or at least be nice! Being nice to the lady that checks you in for clinic appointments thrice weekly to the RNs and techs that wake you up in the middle of the night for vitals and blood work. Guess what, they deal with a lot of crap, so don’t give them any more of it. Be nice, get to know them (if you’re up and alert/willing to talk...if you’re totally passed out, don’t worry, they won’t mind), and gosh darnit, try to say thank you for at least some of the nice things they do. Because really, then they’ll do MORE nice things for you (like bring you vanilla ice cream!) and really enjoy having you as a patient/it will be a nicer experience for the both of you! As an inpatient, you are really at the mercy of your medical support team, so at least learn and use the names of RNs and techs (hint: they write them on a board in your room). 

5. Slow down. Newsflash: I move too fast. While this is simply old news to most who know me, this experience has been a re-evaluation of moving with intention and trying not to rush around. I say trying, because this is certainly still a work in progress.

Surprisingly, this last month has really flown by. With all of the traveling back and forth to the hospital, days kind of get sucked up, making it all the more important that I consistently work on letting myself rest. Rest, a sometimes very mentally challenging activity that I have to trick myself into doing. Even though it is hard to not be with my husband in our new home, starting our life together, we both know that having me here is the best for my health and for the situation at hand. I could not ask for a more caring, supportive, or thoughtful man to be in my life and through all of this he has only shown how truly perfect a fit we really are. It is also a blessing to have such loving parents, willing to completely sanitize their house and rearrange their schedules, trips included, to assist in facilitating my care. No matter how much we may annoy each other at times or I may resent having to be chauffeured to and from appointments, my parents are really doing their best to make this unwanted experience that much easier. I am also very grateful and fortunate to have so many good friends within driving or flying distance for visits and have thoroughly enjoyed, appreciated, and even been brought to tears from the outpouring of love and support from all. Which all brings me to hope. I believe know that I am going to get better, it is just a matter of patience with the process, the ups and downs, and not losing the strength of spirit that make me who I am. And I can patiently wait for that.